Archive for the ‘Press Releases’ Category

People with Down Syndrome Set a GUINNESS WORLD RECORDS™ Title

April 9th, 2021 by Global Down Syndrome Foundation

Global Down Syndrome Foundation and Down Syndrome Association of Ontario show the world that there are no limits

CLICK HERE TO DOWNLOAD ASSETS OF THE GUINNESS WORLD RECORDS TITLE ATTEMPT.


DENVER, TORONTO – Friday, April 9, 2021 – Today, Global Down Syndrome Foundation (GLOBAL) and Down Syndrome Association of Ontario (DSAO) proudly announce that a dedicated group of people with Down syndrome have set the GUINNESS WORLD RECORDS title for most people doing the Raise the Roof dance move online simultaneously.

On March 21st, World Down Syndrome Day, and then again on March 27th, nearly 600 people from 27 countries participated in a round-the-world dance party that culminated in the record-setting feat. 

“Global Down Syndrome Foundation and Down Syndrome Association of Ontario are proud to be able to tell the world that a dedicated group of people with Down syndrome have set a GUINNESS WORLD RECORDS title,” says Michelle Sie Whitten, President & CEO of Global Down Syndrome Foundation. “This shows the world that children and adults with Down syndrome can and should have big aspirations that lead to extraordinary achievements.”

“We are grateful to Guinness World Records for giving us this opportunity,” says Domenic Gentilini, Chair of the Down Syndrome Association of Ontario. “It was actually quite a challenge with many requirements. It was also an opportunity during this devastating pandemic to virtually gather, celebrate, and be joyous. We are so proud of our attendees and, of course, our teams at DSAO and GLOBAL.”

Celebrity participants included Zack Gottsagen and Frank Stephens. Key sponsors included: Down Syndrome Connection of the Bay Area, Down Syndrome Association of Peel, Down Syndrome Association National Capital Region, Down Syndrome Association of York Region, Down Syndrome Association of Brantford, Waterloo Down Syndrome Association, Down Syndrome Association Simcoe County, Down Syndrome Association of Peterborough, Down Syndrome Guild of Greater Kansas City, and RE/MAX.

The 21-hour dance party was supported by The Sonic Crew and 21 DJs including Shane Beard, who happens to have Down syndrome. The dance party started in Australia then moved to Malaysia, United Arab Emirates, South Africa, England, Ireland, Canada and ended in the United States.

“I was happy to support GLOBAL, DSAO and of course win a GUINNESS WORLD RECORDS title!” says Zack Gottsagen, award-winning actor from The Peanut Butter Falcon. “It was great to see some friends, make new friends, and bust a move!”

“We participated as a family for all three attempts,” says Rachael DiCarlo. “We had a fabulous time and appreciated all the organization that went into it. When our little butterfly Laurel was born, we had no idea about all the milestones that would be met – and now we can add a GUINNESS WORLD RECORDS title to her amazing accomplishments!”

The official attempt was verified by Guinness World Records adjudicator, Andrew Glass. GLOBAL and DSAO set the record with 170 successful participants. The minimum to set the record was 100.


FOR MORE INFORMATION, PLEASE CONTACT:

Anca Elena Call
PR Consultant, GLOBAL
acall@globaldownsyndrome.org
720-320-3832

Guinness World Records
Press@GuinnessWorldRecords.com


About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and medical care. GLOBAL has a membership of over 150 Down syndrome organizations worldwide and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.

GLOBAL’s widely circulated medical publications include GLOBAL Medical Care Guidelines for Adults with Down Syndrome, Prenatal Testing and Information about Down Syndrome, and the award-winning Down Syndrome WorldTM magazine. GLOBAL also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (Facebook & Twitter: @GDSFoundation, Instagram: @globaldownsyndrome).

About DSAO

The Down Syndrome Association of Ontario (DSAO) is a charitable, non-profit organization composed of 19 local Down syndrome associations from across Ontario, Canada. Together, we coordinate the efforts to raise awareness, educate, and encourage the inclusion of people with Down syndrome and their families across Ontario. Our areas of focus include Health Care, Education, and Social Services.

About Guinness World Records

What’s the fastest game bird in Europe? This was the question that inspired the founding of Guinness World Records back in 1955. Starting with a single book published from a room above a gym, GWR has grown to become a global multi-media brand, with offices in London, New York, Miami, Beijing, Tokyo and Dubai. Today, we deliver world-class content, not just through Books, but via TV shows, Social Media and Live Events. Our in-house consultancy works closely with brands and businesses around the world to harness the power of record-breaking and deliver award-winning campaigns and business solutions. Our ultimate purpose is to inspire people - individuals, families, schools, groups, companies, communities and even entire countries – to read about, watch, listen to and participate in record-breaking. To join this record-breaking community – and find out the answer to that original question – visit guinnessworldrecords.com

GLOBAL Down Syndrome Foundation Educational Grants

April 6th, 2021 by Global Down Syndrome Foundation

2021 Educational Grant Cycle
TEMPORARILY REPLACED BY COVID-19 EMERGENCY RELIEF GLOBAL GRANTS

As of January 2021, GLOBAL has made the decision to continue to postpone the GLOBAL Membership Educational Grant cycle due to the COVID-19 pandemic. 

In response to the COVID-19 pandemic in the spring of 2020, GLOBAL worked quickly to provide COVID-19 Emergency Relief GLOBAL Grants (Relief Grants) to our organization members in lieu of Educational and Self-Advocate Employment Initiative Grants. The Relief Grants’ first cycle provided over $116,000 to more than 140 families through the Family Relief Grants and aided 42 Down syndrome organizations through the Organizational Relief Grants. 

Our Down syndrome organization members continue to inform us that many more individuals with Down syndrome and their families need help during this terrible pandemic. As a result, we have decided to host another cycle of the Relief Grants, specifically to serve families. Applications for eligible Down syndrome organizations will open Wednesday, February 3, 2021. Visit the Relief Grants webpage for more information.

Thank you for helping save the lives of people with Down syndrome, and please stay healthy and safe!

Visit GLOBAL’s page for updates on COVID-19 and Down syndrome.

About the Grants

The Global Down Syndrome Foundation Educational Grants are a benefit for GLOBAL organization members. The Grants are a direct result of surveys sent to many local Down syndrome organizations and feedback from DSAIA Leadership Conference workshops. The surveys and feedback underscored the importance of local educational programs towards creating a brighter future for people with Down syndrome. The Grants go directly to Down syndrome organizations to host educational programs for self-advocates, medical professionals, teachers, and parents, and beyond. The Grants will provide parameters to ensure that such educational programs are successful and sustainable.

Overview

  • From 2012 to 2019, GLOBAL awarded $625,000 to 72 innovative educational programs
  • Grants are awarded in amounts up to $10,000 each
  • Grants are awarded on an annual basis and there is no limit to consecutive funding
  • Global Down Syndrome Foundation representatives review all proposals

Eligibility

  • Applicant must be a Global Down Syndrome Foundation member (to join or to learn more about memberships details and benefits, go to www.downsyndromeworld.org)
  • The proposal must be for a new educational program or a significant extension of an existing program; in both cases the educational program should have a clear and measurable impact that benefits people with Down syndrome
  • Only organizations that are designated 501(c)(3) by the IRS can apply, or if located outside of the US, equivalent proof of nonprofit charitable government issued status
  • Organizations must link from their websites to the Global Down Syndrome Foundation (www.globaldownsyndrome.org) as a resource
  • A Grant Agreement with terms of post-program reporting must be signed once a Grantee is chosen in order to access the Grant funds

2019 Awardees

In 2019, GLOBAL awarded $75,000 to twelve of its member organizations, bringing the total given through its Educational Grants program to over $625K. Since 2012, GLOBAL has awarded grants to 72 innovative educational programs developed by local, national and international Down syndrome organizations. View the announcement. 

  • Alaska Down Syndrome Network (Anchorage, AK) “Alaska Regional Conference” will bring families from rural and small towns to Anchorage for a weekend conference to gain more knowledge on medical issues, behavioral issues, and education topics as well as connect with other area families.
  • Down Syndrome Association of Greater Cincinnati (Cincinnati, OH) “Caring for the Adult with Down Syndrome” will bring medical experts to Cincinnati Children’s Hospital Thomas Center for Down Syndrome for Grand Rounds presentations to introduce medical professionals to the newly revised Medical Care Guidelines for Adults with Down Syndrome.
  • Down Syndrome Association of Indiana, Inc. (Indianapolis, IN) “Public Policy 101” is a series of live workshops and webinars which will cover a variety of topics related to preparing participants to take action on public policy issues, such as how to contact your local legislator, current issues facing families of children with Down syndrome, and more.
  • Down Syndrome Association of Memphis & the Mid-South (Cordova, TN) “Individual Education Plan (IEP) Coaching/Seminar” will bring educational experts to the Memphis area for a monthly seminar to give parents and teacher the tools and knowledge necessary to have successful IEPs.
  • Down Syndrome Association of Middle Tennessee (Mt. Juliet, TN) “Extraordinary Lives Conference” is a one-day conference that will bring in national and regional professionals to share their expertise in the latest research and best practices for helping those with DS through three tracks for educators, caregivers, and self-advocates.
  • Down Syndrome Association of Minnesota (St. Paul, MN) “Statewide Learning Conference” is a weekend conference that will inspire and equip parents and individuals with Down syndrome with the most up to date information, research, and best practices in healthcare, inclusive education, community integration, and economic self-sufficiency.
  • Down Syndrome Association of the Valley (Boardman, OH) “Summer Enrichment Program with Aaris Therapy” is a comprehensive weeklong program where participants with Down syndrome will concentrate on effective communication and improving social skills to help build important learning skills in the education process.
  • Green Oaks Education and Support, Inc. (Arlington, TX) “Improving Health and Wellness through Education and Practice” is a two-part program involving an interactive cardio workout for people with Down syndrome to improve their level of physical activity and an educational series for caregivers to promote health in the home.
  • Hearts2Honduras, Inc. (El Progreso, Honduras) “Love and Learn 21 Program” is designed to provide educational opportunities for people with Down syndrome in Honduras. Teachers will partner with participants and their families to create individualized plans in an effort to meet the needs of each student.
  • Inclusion Connections (Olathe, KS) “EmployAbility” provides the educational opportunities and vocational training needed for young adults with Down syndrome and other developmental disabilities to acquire the necessary skills and knowledge required to obtain paying jobs.
  • KIIDS, Inc. (Bellmawr, NJ) “Pathways to Independence” will consist of a series of workshops, each with a specific focus and aligned with the long-term goal of establishing skills and knowledge to enable middle and high school aged people with Down syndrome to successfully navigate the choices, freedoms and challenges that come along with the transition to teen and adulthood and to become as independent as possible.
  • Little Leaf Learning Center, Inc. (Omaha, NE) “Operation School Success” is designed to assist families and children with Down syndrome in their transition from pre-school classes into kindergarten. This includes IEP training, education on rights, legal counselling, and parent to parent discussion groups for parents.

2018 Awardees

In 2018, GLOBAL awarded $74,912 to nine of its member organizations, bringing the total given through its Educational Grants program to over $550K. Since 2012, GLOBAL has awarded grants to 60 innovative educational programs developed by local, national and international Down syndrome organizations.View the press release. 

  • ACDS (Plainview, NY) “Breakfast Club” will provide free informational material to children and adults with Down syndrome, their parents, caretakers and professionals. Topics anticipated include developing a support system, potty training, advocacy, using technology, managing challenging behavior and more.
  • The Cedars of Marin (Ross, CA) “Healthy Living Education Program” will help educate the residents and day program participants at Cedars about health and wellness. The program will offer engaging learning activities for participants with the goal of improved nutrition and physical activity.
  • Down Syndrome Albania Foundation (Tirana, Albania) “The ABC of Inclusion” will promote the best practices for inclusive education by exchanging experiences and strategies on functioning and development from three Balkan countries: Albania, Kosovo and Macedonia. The program will also help increase the quality of inclusive education by improving the curriculum for first grade students.
  • Down Syndrome Foundation of Greater Richmond (Richmond, VA) “Moving On!” is an adult program that will develop key skills needed to explore the possibility of living independently for adults with Down syndrome. It will teach the life skills needed to live independently in their current family home and how to become equal contributors to their household or in the community.
  • Down Syndrome Association of Greater St. Louis (St. Louis, MO) “Silver Steps: Support Services for Caretakers of Aging Adults with Down Syndrome” will expand upon the current Silver Steps program to provide a series of workshops offering concrete resources and services for caregivers.
  • Down Syndrome Guild of Dallas (Richardson, TX) “First Call” program will provide training to parents who have a child with Down syndrome to talk with and mentor new families expecting a child with Down syndrome.
  • Down Syndrome Network of Montgomery County (Rockville, MD) “Techniques for Success” is a yearly conference providing education strategies for students from preschool to high school with Down syndrome. Attendees include general and special education professionals, paras, administrators and home schooling parents.
  • Down Syndrome Partnership of North Texas (Fort Worth, TX) “NetSmartz: Staying Safe with Social Media” will use a hands-on curriculum to teach individuals with Down syndrome, parents, caregivers and professional educators about online/social media safety. It will use a version of NetSmartz that has been adapted to appeal to and educate individuals with Down syndrome and other IDDs.
  • GraceSigns (Tiburon, CA) “Sign Me a Sentence” will be new app available to children with Down syndrome and other IDD with a focus on teaching approximately 20 key phrases in sign language in verbal and auditory form.

2017 Awardees

In 2017, the Global Down Syndrome Foundation awarded $75,250 to nine organizations in eight states through GLOBAL’s membership grant program.  The grants were announced at the NDSC Annual Convention which attracted nearly 4,000 attendees in Sacramento, CA. To date, GLOBAL’s membership Educational Grant program has provided over $475,000 to over 50 programs developed by Down syndrome organizations across the nation. View the press release. 

  • Connecticut Down Syndrome Congress (Meridan, CT) “Open Books Open Doors” provides free literacy assessments and skill development for children with Down syndrome, as well as resources for parents and teachers regarding best practices in literacy instruction.
  • Down Syndrome Association of Central Florida (Winter Park, FL) “Entrepreneur Academy” is intended for teens and adults with Down syndrome who are interested in starting their own micro-enterprises. The program will teach and empower individuals on business ventures and conclude with an entrepreneur showcase.
  • Down Syndrome Association of Central New Jersey (Ewing, NJ) “I Can Ride and I Can Swim” is a health and wellness camp that will allow individuals with Down syndrome to gain skills in biking and swimming.
  • Down Syndrome Association of Delaware (Middletown, DE) “Employment Readiness Training Workshop” is for teenage and adult self-advocates along with their parents and guardians focusing on how to find a job and the necessary life skills for employment, such as time management, communication, interview processes, work ethic, and more.
  • Down Syndrome Association of Jacksonville (Jacksonville, FL) “Career Solutions, Working Towards Success Workshop” is an employment readiness course offered to young adults with Down syndrome working towards a goals of employment after graduation. Participants will be taught professionalism, teamwork, networking, problem solving skills, and more.
  • embraceKulture (San Francisco, CA) “Parent Skills Training for At-Home Intervention in Uganda” is an educational program designed to train parents in skills to deliver intervention at home, specifically an emphasis on cognitive and social skills to achieve academic goals and improve parent-child interactions.
  • Gigi’s Playhouse El Paso (El Paso, TX) “Medical Symposium for Individuals with Down Syndrome from Birth to Adulthood” is a yearly conference that will address the medical and mental health needs of individuals with Down syndrome by bringing in experts to educate and inform professionals and families.
  • Gigi’s Playhouse Milwaukee (Milwaukee, WI) “One-On-One Math Tutoring Program” will pair students with Down syndrome with tutors in individually scheduled sessions to build upon their math skills such as shapes, fractions, measurement, time, money, and data.
  • Triangle Down Syndrome Network (Raleigh, NC) “Specialized Learning Series” will work with parents and caregivers on how to teach their children with Down syndrome reading, math, and writing in a systematic instructive way with trained professionals. After instruction, families will practice learned skills with their child in a classroom sample setting with trained educators.

2016 Awardees

In 2016, the Global Down Syndrome Foundation awarded $92,200 to eleven organizations in eleven states through GLOBAL’s membership grant program.  The grants were announced at the NDSC Annual Convention which attracted nearly 4,000 attendees in Orlando, FL. To date, GLOBAL’s membership Educational Grant program has provided $400,000 to over 40 Down syndrome organizations across the nation. View the press release.

  • Phoenix Children’s Hospital Foundation (Phoenix, AZ)
    “Family Education Events through the Pediatric Down Syndrome Clinic” will be a monthly workshop lead by the medical team at the clinic to educate parents and family members of children with Down syndrome to better understand their medical needs, discuss at-home care, and navigate the state education system to obtain education resources.
  • Down Syndrome Connection of the Bay Area (Danville, CA)
    “Future Connections” is a tool designed to assist adolescents and young adults with Down syndrome in identifying their preferences, interests, and needs. It is intended to be used in collaboration with families and caregivers in order to implement effective life planning.
  • Gold Coast Down Syndrome Organization (Boyton Beach, FL)
    “Best Start” is a year-long weekly education workshop for parents and children. Separated into two distinct sessions, the program will give self-advocates and parents the tools to aid them in academic, social, communication, creative, and personal success.
  • Down Syndrome Association of Central Kentucky (Lexington, KY)
    “DSACK Learning Program Level 2” will expand their current Learning Program to serve older students ages 8-12 and their parents. The Learning Program is parent/child focused and empowers parents to teach their children literacy, math, and other skills.
  • Down Syndrome Association for Families of Nebraska (Lincoln, NE)
    “DSAF of Nebraska 2016 Educational Conference” provides accurate and up to date information on best practices in the field of Down syndrome to parents, educators, medical professionals, and direct service professionals across the state of Nebraska annually, with a focus on education and behavior in children with Down syndrome.
  • Down Syndrome Foundation of Southeastern New Mexico (Roswell, NM)
    “Down Syndrome Education & Medical Conference” will enlighten and educate the community about available research and medical care, and connect parents and medical professionals. This will extend upon their current annual conference and allow them to bring in medical professionals as speakers and panelists.
  • Down Syndrome Association of Hudson Valley (Hopewell Junction, NY)
    “BEST: Behavioral Education Support Team” is a workshop and home based therapy program to educate parents and caregivers on the value of teaching appropriate behavior to children with Down syndrome with the assistance of Applied Behavior Analysis.
  • Down Syndrome Association of Greater Charlotte (Charlotte, NC)
    “DSAGC Together in Education” is a two component program with an in-school portion providing training, support, and resources to Down syndrome specialists in the Greater Charlotte school districts, and a two-day conference for educators, service providers, and families.
  • Designer Genes of North Dakota (Bismarck, ND)
    “Pathfinder Parent Involvement Conference” will collaborate with Pathfinder Services of North Dakota to add a specific track to educate families and medical professionals about issues relating to school-aged individuals with Down syndrome during their annual conference.
  • Down Syndrome Association of Central Ohio (Columbus, OH)
    “The Learning Program Online” will expand the current online Learning Program to a full year and add a second level for school-aged children with Down syndrome and their parents.
  • Down Syndrome Association of Wisconsin (St. Francis, WI)
    “Young Leaders Academy” is a program designed to help teens and young adults with Down syndrome build skills that lead to employment readiness and the ability to live and work independently in the community.

2015 Awardees

Eight educational programs are receiving grants varying from $7,500 to $10,000, totaling $75,300. The eight local Down syndrome organizations were announced at the 2015 National Down Syndrome Congress Annual Convention in Phoenix.

Grant recipients detailed their ideas, budgets and goals for educational programs as part of their applications, which were reviewed for thoroughness, potential, diversity and sustainability. More than 90 applications have been submitted through the program. View the press release.

  • Down Syndrome Indiana (Indianapolis) – “State-wide Down Syndrome Conference” will provide accurate and up to date information on best practices in the field of Down syndrome to parents, self-advocates, educators, medical professionals, and direct service professionals across the state of Indiana.
  • Down Syndrome Alliance of the Midlands (Omaha, Neb.) – “Heartland Genetics Services Collaborative’s Care Coordination: Empowering Families” will provide parents with the skills, knowledge, and resources they need to coordinate care for children with genetic conditions in partnership with a medical home.
  • Down Syndrome Association of Greater Cincinnati (Cincinnati) – “Summer Enrichment Classes” is a supplemental academic program for children with Down syndrome, ages K through 8, to work in small groups with certified special education teachers and teaching assistants on reading and math skills.
  • Down Syndrome Association of Greater St. Louis (St. Louis) – “DSAGSL Employment Initiative” offers a unique, grassroots, person-centered program option for career exploration and skill development that is specific to individuals with Down syndrome.
  • Down Syndrome Association of Jacksonville (Jacksonville, Fla.) – “Community Inclusion and Vocation Aptitude Program” will provide individuals with Down syndrome, between the ages of 16 and 30, with an 8 week program targeted at developing the adaptive skills needed to live independently in a safe and socially responsible manner.
  • Down Syndrome Association of West Michigan (Grand Rapids, Mich.) – “The Learning Program” is a supplement to traditional education for children with Down syndrome. DSAWM will offer Level 1 of TLP, which builds on traditional education through development of literacy, math, motor and speech skills.
  • Down Syndrome Network Arizona (Tempe, Ariz.) – “Life’s Journey…with Down Syndrome” is a workshop providing parents the tools they need to effectively teach their children with Down syndrome important topics like behavior, thriving in adulthood, reading, health and wellness, and prenatal topics.
  • Red River Valley Down Syndrome Society (Paris, Texas) – “Johnny Stallings Recreational REACH (Raising Expectations and Creating Hope)” will provide adults with Down syndrome classes on cooking, living independently, reading, money management, emotional and social skills.

2014 Awardees

Nine educational programs are receiving grants varying from $5,000 to $10,000, totaling $77,500. The nine local Down syndrome organizations were announced at the 2014 National Down Syndrome Congress Annual Convention in Indianapolis. View the press release.

  • Club 21 Learning & Resource Center (Southern California) — “Equipping Educators” will provide funding for substitute teachers so that 50 general education teachers can attend training on inclusion and addressing the needs of students with Down syndrome.
  • Down Syndrome Alliance of the Midlands (Nebraska and Iowa) — “Down Syndrome Education Series for Parents” will help parents of children with Down syndrome be better equipped to participate in their students’ education, work more effectively with their school districts, and prepare for transitions.
  • Down Syndrome Association of Delaware — “Adult Down Syndrome Clinic” will be a new program initially serving five patients per clinic with a goal of 100 unique patients over the first three years. Funding will help provide education to the physicians and staff at the clinic while mirroring some of the successful Adult Down Syndrome Clinic models found across the country.
  • Down Syndrome Awareness Group of Baton Rouge (Louisiana) — “Second Annual Down Syndrome Conference” will be an expanded version of the group’s first successful conference, allowing for a dance for people with Down syndrome and more education and networking opportunities for medical professionals, parents and children with Down syndrome.
  • Down Syndrome Community (Seattle) — “Learning Program – Level 1 Pilot” will supplement traditional education, focusing on parents as first teachers for their children. Level 1 focuses on skill development for literacy, math, language and fine motor skills.
  • Down Syndrome Foundation of Southeastern New Mexico  — “Education Workshop” is intended to build upon the success of previous workshops to reach over 150 school administrators, teachers, therapists, auxiliary staff and parents and provide valid research and techniques in educating students with Down syndrome.
  • Gold Coast Down Syndrome Organization (Florida) — “Get a Life!” will be a monthly program geared toward transition-age individuals who have Down syndrome to give them and their families the tools for developing a full life in the community as adults.
  • Montana Down Syndrome Association — “Resource Connection” will provide a unique resource library offering books, curriculum materials, adaptive equipment and play materials that can be loaned to families of people with Down syndrome.
  • Up Side of Downs of Northeast Ohio — “Mind Body Soul Adult Mini-Conferences” will be two half-day events for adults with Down syndrome that provide a series of hands-on activities such as photography, makeup and party planning, as well as life-skills topics like safety, technology, money management and other critical issues for daily living.

2013 Awardees

In 2013 more than 50 applicants detailed their ideas, budgets and goals for educational programs as part of their applications, which were reviewed for thoroughness, potential and sustainability.

  • Down Country (Missouri, Illinois, Iowa) — “I Learn / I Speak / I Care” is designed to give rural residents access to cutting-edge education and information through workshops, and provide technology to rural schools.
  • Down Syndrome Association of Brazos Valley (Texas) — “Keys to Success” will create a computer training program, including a computer lab, to help students with Down syndrome acquire computer skills for everyday life, as well as job security and independence.
  • Down Syndrome Association of Central Florida — “Global Down Syndrome Regional Seminar Series” will be a quarterly program for self-advocates, their families and medical professionals in various locations across central Florida.
  • Down Syndrome Association of Central Oklahoma — Full-day workshops will serve as learning tools for parents who have children with Down syndrome in hopes of empowering them to advocate strongly for their children at school, in extra-curricular activities and in the workplace.
  • Down Syndrome Association of Greater Richmond — “Learning Program” will provide programming for children with Down syndrome ages 4 to 7, supplementing their formal instruction in school with additional help in literacy and math.
  • Down Syndrome Association of Memphis & the Mid-South — “Self Advocate Council Delegation” will help people with Down syndrome to have a voice and to speak up for themselves by preparing PowerPoints for public speaking, planning their own social events, and planning volunteer efforts and fundraising ideas.
  • Puerto Rico Down Syndrome Foundation — “Increasing Access” will be an educational pilot program for adults with Down syndrome that involves developing a curriculum and helping at least 20 adults with reading, writing and math skills.
  • Red River Valley Down Syndrome Society (Texas) — “After School / After Work Recreation Center” will build academic, emotional and social skills for people with intellectual disabilities and their typical peers through enrichment classes, workshops and peer interaction.

2012 Awardees

In 2012, more than 30 grant proposals were reviewed for thoroughness, potential and sustainability. Six grant recipients were announced at the National Down Syndrome Congress Convention in July 2012:

  • Down Syndrome Association of Greater Richmond – The grant funds inaugural “From PossAbilities to Practical Applications” Educational Conference for parents, educators and professionals who work with individuals with Down syndrome
  • Down Syndrome Association of Northern Virginia – The grant funds IEP Support Program to help parents navigate the special education system by providing an annual seminar, followed by monthly roundtable discussions, and opportunities for individual IEP support and consultation
  • Down Syndrome Society of Mobile County – The grant funds development and implementation of an Icebreakers Etiquette Class that will give teens and adults with Down syndrome more confidence in social settings
  • Gold Coast Down Syndrome Organization – The grant funds expansion of Exceptional Educators program, which trains teachers, paraprofessionals and administrative staff in creating successful inclusive classrooms
  • Down Syndrome Foundation of SE New Mexico – The grant funds DSF Educational Workshop to educate the educators about the realities of teaching students with Down syndrome; this annual event will provide educators the tools to include students with Down syndrome successfully in the general classroom environment
  • Down Syndrome Connection of the Bay Area – The grant funds Down Syndrome Educational Alliance to identify and train school-based Down syndrome specialists to ensure that students with Down syndrome have the support, tools and resources to reach their potential

Testimonials

Here is what some of the initial grant recipients have said about the program:

“The grant’s national recognition allows us to promote and showcase the program as not only a collaboration with our county school district, but also with national partners.”

“These dollars are making a difference all over the US and in both rural and urban areas.”

PLYMOUTH, Minn., DENVER, BURLINGTON, Mass., ATLANTA, NEW YORK CITY, and ROCKPORT, Maine, March 2, 2021 /PRNewswire/ — Today, an important and timely COVID-19 and Down Syndrome Resource (“Resource”) was published by a consortium of national Down syndrome organizations: the Down Syndrome Medical Interest Group-USA (DSMIG-USA), Global Down Syndrome Foundation (GLOBAL), LuMind IDSC Foundation (LuMind IDSC), National Down Syndrome Congress (NDSC), National Down Syndrome Society (NDSS), and National Task Group on Intellectual Disabilities and Dementia Practices (NTG).

The Resource builds upon the publication of the Q&A on COVID-19 & Down Syndrome and focuses on new and updated information specific to testing, vaccines, mental health, ways to stay safe, and advocacy in hospital settings and for appropriate care. It is available in both English and Spanish.

“It is important and useful to have tips on how to help individuals with Down syndrome prepare for the vaccine, especially if they have an aversion to needles,” says Debbie Shadrix, Georgia mom to Bradley Carlisle, a self-advocate who just received his second dose. “I also think everyone should read the sections on mental health and safety!”

In December of 2020, the Center for Disease Control and Prevention (“CDC”) officially added Down syndrome to the list of medical conditions that are considered “high-risk” for severe illness or death from COVID-19. This decision was made after studies found that adults with Down syndrome, particularly those age forty and older, are 4-5 times more likely to be hospitalized and 10 times more likely to die from complications associated with COVID-19.

Adding Down syndrome to the CDC list of high-risk conditions has had implications for vaccine prioritization and distribution, another topic which is discussed in detail in the new COVID-19 and Down Syndrome Resource

“This Resource is very helpful in explaining the vaccines and when the CDC recommends those with Down syndrome should get it,” says Dolores Zarate, founder of Down By The Border in Texas and mother of Zariah, who has Down syndrome. “It also makes it clear that the governors and states will ultimately decide who gets it when, and we will continue to advocate for individuals with disabilities to move up in priority.”

This Resource is informational only and not intended to provide medical advice or related advice. This Resource should NOT be considered a substitute for the advice of medical professionals or other professionals. Consult with your doctor or other healthcare professional(s) for medical advice. 

The following national and international organizations support the COVID-19 & Down Syndrome Resource: Down Syndrome Affiliates in Action, Exceptional Parenting Magazine, GiGi’s Playhouse, International Mosaic Down Syndrome Association, Jerome Lejeune Foundation, Matthew Foundation,T21 Research Society, and Down Syndrome Association of Ontario.

This Resource is copyrighted and cannot be duplicated on any website or edited without infringement of intellectual property. However, families, friends, and professionals are encouraged to visit any of the consortium member websites hyperlinked below to download a PDF or share the PDF by email, text, or social media.

About the National Consortium

Down Syndrome Medical Interest Group-USA (DSMIG-USA) 
DSMIG-USA is a group of health professionals committed to promoting the optimal health care and wellness of individuals with Down syndrome across the lifespan.

Global Down Syndrome Foundation (GLOBAL)
The Global Down Syndrome Foundation is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome.

LuMind IDSC Foundation (LuMind IDSC)
The LuMind IDSC Foundation is a non-profit organization that accelerates Down syndrome research to increase availability of therapeutic, diagnostic, and medical care options and empowers families through education, connections, and support.

National Down Syndrome Congress (NDSC) 
The National Down Syndrome Congress is a not-for-profit organization dedicated to an improved world for individuals with Down syndrome. 

National Down Syndrome Society (NDSS) 
The mission of the National Down Syndrome Society is to be the leading human rights organization for all individuals with Down syndrome.

National Task Group of Intellectual Disabilities and Dementia Practices (NTG)
The NTG’s mission is to advocate for services and supports for people with intellectual disability and their families who are affected by Alzheimer’s disease and dementias.

 
Press Contacts
GLOBAL: Anca Elena Call | acall@globaldownsyndrome.org | c: (720) 320-3832
NDSC: Rhonda Rice | rhonda@ndsccenter.org | c: (678) 770-6641
NDSS: Michelle Sagan | msagan@ndss.org | c: (202) 848-5409
LuMind IDSC: Kate O’Neill | koneill@lumindidsc.org | c: (508)-344-4932
NTG: Matthew P. Janicki, Ph.D | janickimp@gmail.com | c: (518) 421-3520
DSMIG-USA: Emilie Perkins | eperkins@raybourn.com
 

PLYMOUTH, Minn., DENVER, BURLINGTON, Mass., ATLANTA, NEW YORK CITY, and ROCKPORT, Maine, 2 de marzo 2021   /PRNewswire/ — Hoy se ha publicado un importante y oportuno Recurso sobre la COVID-19 y el síndrome de Down (“Recurso”) por parte de un consorcio de organizaciones nacionales de síndrome de Down: el Grupo de Interés Médico del Síndrome de Down-Estados Unidos (DSMIG-Estados Unidos), la Fundación Global del Síndrome de Down (GLOBAL), la Fundación LuMind IDSC (LuMind IDSC), el Congreso Nacional del Síndrome de Down (NDSC), la Sociedad Nacional del Síndrome de Down (NDSS) y el Grupo de Trabajo Nacional sobre Prácticas de Discapacidad Intelectual y Demencia (NTG).

El recurso se basa en la publicación de “COVID & SD Preguntas y Respuestas” y se centra en información nueva y actualizada específica sobre las pruebas, las vacunas, la salud mental, las formas de mantenerse a sano, la defensa en los entornos hospitalarios y la atención adecuada. Esta disponible en ingles y español.

“Es importante y útil tener consejos sobre cómo ayudar a las personas con síndrome de Down a prepararse para la vacuna, especialmente si tienen aversión a las agujas,” dice Debbie Shadrix, de Georgia madre de Bradley Carlisle, que aboga por si mismo acaba de recibir su segunda dosis. “También creo que todo el mundo debería leer las secciones sobre salud mental y seguridad.”

En diciembre de 2020, los Centros para el Control y la Prevención de Enfermedades (“CDC”) añadieron oficialmente el síndrome de Down a la lista de condiciones médicas que se consideran de “alto riesgo” de enfermedad grave o muerte por COVID-19. Esta decisión se tomó después de que los estudios descubrieran que los adultos con síndrome de Down, especialmente los mayores de cuarenta años, tienen entre 4 y 5 veces más probabilidades de ser hospitalizados y 10 veces más probabilidades de morir por complicaciones asociadas a la COVID-19.

La inclusión del síndrome de Down en la lista de enfermedades de alto riesgo del CDC ha tenido implicaciones para la priorización y distribución de las vacunas, otro tema que se trata con gran detalle en el nuevo Recurso de COVID-19 y SD.

“Este recurso es muy útil en la explicación que dan sobre las vacunas y cuando el CDC recomiendan que las personas con síndrome de Down reciban la vacuna, ” dice Dolores Zarate, fundadora de Down By The Border en Tejas que tiene una hija, Zariah, que tiene síndrome de Down. “También deja claro que los gobernadores y los estados decidirán, en última instancia, quién lo recibe y cuándo, y seguiremos defendiendo que las personas con discapacidad suban de prioridad.”

Este recurso es meramente informativo y no pretende proporcionar asesoramiento médico o relacionado. Este recurso NO debe considerarse un sustituto del consejo de los profesionales médicos o de otros profesionales. Consulte con su médico o a otro(s) profesional(es) de la salud para obtener asesoramiento médico.

Cuenta con el apoyo adicional de las siguientes organizaciones nacionales e internacionales: Afiliados al Síndrome de Down en Acción, GiGi’s Playhouse, Asociación Internacional Mosaico de Síndrome de Down, Fundación Jerome Lejeune, Asociación de síndrome de Down de Ontario,Revista para padres excepcionales, Fundación Matthew, y T21RS.

Este recurso está protegido por derechos de autor y no puede ser duplicado en ningún sitio web ni editado sin infringir la propiedad intelectual. No obstante, se anima a las familias, los amigos y los profesionales a que visiten cualquiera de los sitios web de los miembros del consorcio a continuación con enlaces a para descargar un PDF o compartirlo por correo electrónico, texto o redes sociales.

Acerca del Consorcio Nacional

Grupo de Interés Médico del Síndrome de Down-Estados Unidos (DSMIG-Estados Unidos) 
DSMIG-Estados Unidos es un grupo de profesionales de la salud comprometidos con la promoción del cuidado óptimo de la salud y el bienestar de las personas con SD a lo largo de su vida.

La Fundación Global del Síndrome de Down (GLOBAL)  
La Fundación Global del Síndrome de Down es la organización mas grande sin fines de lucro en los Estados Unidos que trabaja para salvar vidas y mejorar drásticamente los resultados de salud con personas con síndrome de Down.

La Fundación LuMind IDSC (LuMind IDSC)  
La Fundación LuMind IDSC es un a organizaciones sin fines de lucro que acelera la investigación y capacita a las familias para mejorar la salud, la independencia y las oportunidades de las personas con síndrome de Down.

Congreso Nacional Síndrome de Down (NDSC)  
El Congreso Nacional Síndrome de Down es una organización sin fines de lucro dedicada dedicada a mejorar el mundo de las personas con síndrome de Down.

La Sociedad Nacional del Síndrome de Down (NDSS)  
La misión de la Sociedad Nacional del Síndrome de Down es ser la principal organización de derechos humanos para todas las personas con síndrome de Down.

El Grupo de Trabajo Nacional sobre Prácticas de Discapacidad Intelectual y Demencia (NTG)  
La misión del NTG’s es defender los servicios y apoyos para las personas con discapacidad intelectual y sus familias afectadas por la enfermedad de Alzheimer y la demencia.

 

Contactos de medios 
GLOBAL: Anca Elena Call | acall@globaldownsyndrome.org | c: (720) 320-3832
NDSC: Rhonda Rice | rhonda@ndsccenter.org | c: (678) 770-6641
NDSS: Michelle Sagan | msagan@ndss.org | c: (202) 848-5409
LuMind IDSC: Kate O’Neill | koneill@lumindidsc.org | c: (508)-344-4932
NTG: Matthew P. Janicki, Ph.D | janickimp@gmail.com | c: (518) 421-3520
DSMIG-USA: Emilie Perkins | eperkins@raybourn.com
 

GLOBAL DOWN SYNDROME FOUNDATION APPOINTS TWO NEW BOARD MEMBERS

February 10th, 2021 by Global Down Syndrome Foundation

Press Contacts:

Anca Callacall@globaldownsyndrome.org | C: (720) 320-3832

DENVER, CO – February 11, 2021 – Today, the Global Down Syndrome Foundation (GLOBAL) announced it has appointed to its board of directors: Philanthropist & Owner/Partner of the Colorado Rockies Charlie Monfort, and International Public Speaker & Self-advocate Frank Stephens. 

Charlie Monfort

Charlie Monfort is an owner, vice chairman, and general partner of the Colorado Rockies. In 1992, Charlie, Oren Benton, and Jerry McMorris were the original general partners and ownership group that brought the Major League Baseball club to Denver and the Colorado region. He has been one of the Colorado Rockies’ managing general partners since inception.

Charlie and his brother Dick Monfort have done extensive community outreach through their family-directed Monfort Family Foundation. In September 2004, the Monfort Family Foundation gifted $10 million to Children’s Hospital Colorado for the construction of a new medical facility in Aurora, CO. The oncology floor of the new hospital is named in memory of Rick Wilson, a cousin of the Monfort family. In addition, the family funded a display of artwork, photography, and Rockies memorabilia to enhance the seventh floor of the hospital. The foundation is a longtime provider of funding and endorsement for the Boys & Girls Clubs in Metro Denver and Weld County. In 2012, they matched dollar-for-dollar on fans’ collected contributions for Coloradoans devastated by summer wildfires.

Also active in higher education, the Monfort family supports the Monfort School of Business at the University of Northern Colorado and the Monfort Excellence Fund at Colorado State University; both impact students, faculty, and the Northern Colorado community through scholarships for exceptional students and support of outstanding faculty. Other organizations that have benefited from the Monfort family’s years of philanthropic work include CU Cancer Center, Craig Hospital, United Way, Denver Art Museum and Habitat for Humanity.

Charlie is a staunch advocate for the differently-abled and served on the board of Special Olympics for over a decade. He is also a member of the Advisory Board for the University of Utah and is an active supporter of the Denver Dream program.

Charlie was named president of Monfort International Sales Corporation in 1988, and under his guidance, it became one of the largest beef exporters in the world and the leading exporter of beef products to Asia. In 1990, Monfort became president of ConAgra Refrigerated Foods International, Inc., which consolidated Monfort International Sales Corporation with all of ConAgra’s international refrigerated foods companies. Charlie resigned from ConAgra in late 1997 in order to concentrate on his leadership role with the Rockies.

Charlie has a bachelor’s degree in marketing & business management from the University of Utah (1982) and served as president of Kappa Sigma Fraternity. He continues to make his home in Greeley, CO, and has four children: son Kenny, daughter Ciara, and twins – son Lucas and daughter Danica.

Frank Stephens

Frank Stephens is an active spokesman for the Global Down Syndrome Foundation and the recipient of GLOBAL’s highest honor, the Quincy Jones Exceptional Advocacy Award. He is also a long-time member of the Board of Directors of Special Olympics Virginia. An accomplished public speaker, Frank has been invited all over North America and Europe promoting inclusion for individuals with intellectual disabilities.

Frank is also an accomplished actor. As a member of his local theater group known as Artstream, Frank has acted in various original plays over the last ten years. Frank also had a feature role in the film Touched by Grace and has made occasional guest appearances on the Emmy Award winning A&E reality show, Born This Way.

Frank’s articles have been featured in publications like The New York Times, London Daily Mail, and The Huffington Post. He contributed to Amazon bestseller, Stand Up, which featured stories of outstanding young advocates.

In 2017, Frank testified on behalf of GLOBAL at the first U.S. Congressional hearing on the importance of Down syndrome research, which helped result in the first significant increase in Down syndrome funding from the National Institutes of Health in nearly 20 years. His famous line, “If you take one thing away from today, know this: I am a man with Down syndrome and my life is worth living,” received the first-ever standing ovation at a congressional hearing and his testimony on C-Span went viral receiving over 200M views.

Frank has been interviewed on behalf of GLOBAL and many other disability organizations by national outlets including BBC, Fox News, CNN, and Inside Edition.

“We are pleased to welcome both Frank and Charlie to the GLOBAL Board of Directors,” said Michelle Sie Whitten, President & CEO of the Global Down Syndrome Foundation. “They are joining us at a pivotal moment when we need more passionate leaders to help us protect people with Down syndrome against COVID-19, support our individuals with Down syndrome and their families hit by the ensuing economic crisis, and deliver on our research, medical care, and research mission. We look forward to their contributions and are grateful they chose GLOBAL as a priority.”


About Global Down Syndrome Foundation
The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and medical care. GLOBAL has a membership of over 150 Down syndrome organizations worldwide and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.

GLOBAL’s widely circulated medical publications include GLOBAL Medical Care Guidelines for Adults with Down Syndrome©, Prenatal Testing and Information about Down Syndrome, and the award-winning Down Syndrome WorldTM magazine. GLOBAL also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (Facebook & Twitter: @GDSFoundation, Instagram: @globaldownsyndrome).

group of people in Masks on a catwalk

The unprecedented virtual event was an overwhelming success which raised $1.9 million for
life-saving and transformative funds for Down syndrome research and medical care

Press Contacts:

Anca Callacall@globaldownsyndrome.org | C: (720) 320-3832
Rejena Carmichaelrcarmichael@globaldownsyndrome.org | C: (240) 603-5494

 

DENVER, CO – November 19, 2020– This weekend, the Global Down Syndrome Foundation (GLOBAL) went virtual for the first time ever and raised over $1.9 million. Now in its 12th year, GLOBAL’s Be Beautiful Be Yourself Fashion Show is the largest fundraiser for Down syndrome in the world and has raised a cumulative $22 million.

Held virtually on Saturday, November 14, the Be Beautiful Be Yourself Fashion Show was a tremendous success. 2020 GLOBAL Ambassador Walt Snodgrass; Music Legend Quincy Jones; supermodels Beverly Johnson and Amanda Booth; award-winning actors John C. McGinley, brothers Matt Dillon and Kevin Dillon, Jeff Probst, Eric Dane, Zack Gottsagen, Jamie Brewer, Megan Bomgaars, Kevin Quinn (appearance arranged by Gotham Artists); Denver Broncos Von Miller, Brandon McManus, Justin Simmons, Jake Butt; Golfer Brad Hennefer; R&B power couple Ronnie & Shamari DeVoe; award-winning journalists Kyra Phillips and John Roberts; musician Sujeet Desai and more, were among those who rocked the virtual runway, which featured <href=”https://bebeautifulbeyourself.org/2020-models/”>25 beautiful models from 8 states and 3 countries who were introduced by their celebrity escorts. The show’s virtual format provided an extraordinary opportunity for people from across the U.S., and the world, to tune-in and join this inspirational and star-studded event. Full list of celebrity line-up: HERE

“It was an honor to emcee the event this year, and to see how all the pieces came together so magically,” says John C. McGinley, who is a GLOBAL board member and international spokesperson, and father to Max, who has Down syndrome. “It truly was the virtual event of the year!”

“We are so grateful to John C. McGinley, our models, celebrities, and donors that helped make our first virtual event a success,” says Michelle Sie Whitten, GLOBAL’s President and CEO. “With COVID we have had such a tough year working to protect people with Down syndrome who are high risk from the virus, and to help families who have been crushed by the economic impact. Despite all that, GLOBAL was still able to deliver on publishing the first medical care guidelines for adults with Down syndrome, advocate for increased NIH research funding, and support over 2,000 patients with Down syndrome. Sadly, this year we also tragically lost our GLOBAL Ambassador DeOndra Dixon so we’re navigating a lot of loss.”

Later in the evening the legendary music icon Quincy Jones presented his namesake awards, the Quincy Jones Exceptional Advocacy Awards, to this year’s winners, award-winning actress and Grey’s Anatomy star Caterina Scorsone and Spanish model Marián Ávila.

“Modeling, walking a runway, and being featured in advertising campaigns is important to me,” says Marián Ávila, who has modeled in New York Fashion Week and has been profiled in international publications including Vanity Fair. “It makes me feel self-assured and happy. And it is a platform for diversity and equity for people with Down syndrome and all people. I am so honored to receive this award – GLOBAL truly allows the world to see us, hear us, and respect us.”

The show paid a loving tribute to the late DeOndra Dixon who is the inspiration behind GLOBAL’s highest honor, the Quincy Jones Exceptional Advocacy Award. DeOndra tragically passed away last month. Music legend Quincy Jones himself introduced GLOBAL to DeOndra as one of the most articulate, irrepressible, magnetic people he had ever met. GLOBAL and DeOndra’s family have set up the “DeOndra Dixon Down Syndrome Research Fund” to focus on the often-neglected population of African Americans with Down syndrome. Anna and John J. Sie are generously matching $100K for this important research. See full tribute: HERE

“It means so much to our family to see DeOndra’s legacy make a difference for GLOBAL and the Down syndrome community that she inspired,” says Mr. George Dixon, DeOndra’s father. “DeOndra was an angel and a star. I know she is looking down on us, loving on us and watching over us. She is our angel.”

“DeOndra’s fund is so important to the Down syndrome community, especially the African American community. It will give us opportunities to better understand and correct the health disparities for African Americans with Down syndrome,” says Beverly Johnson, a GLOBAL international spokesperson and aunt to Natalie Fuller, a GLOBAL model who happens to have Down syndrome.

Another highlight of the evening were the heartfelt performances honoring those in the Down syndrome community who have battled COVID-19. The Fray’s Isaac Slade gave an exclusive performance of “How to Save a Life,” and Multiplatinum Artist Rachel Platten performed her iconic “Fight Song” and “Better Place,” which left the audience on their feet from the comfort of their own homes. The Ransom Notes shared their wonderful Folk-Americana-Bluegrass music all the way from Nashville and had everyone clapping. To end the evening, Multi-platinum artist and actor Phillip Phillips performed a heartfelt tribute in honor of DeOndra Dixon with a beautiful rendition of “Gone, Gone, Gone.” Rachel Platten and Phillip Phillips’ appearances were arranged through Gotham Artists.

Lou III and Jill Rotella from Omaha chaired the 2020 event – GLOBAL’s first virtual Be Beautiful Be Yourself Fashion Show. Past event chairs include Kacey Bingham and Brittany Bowlen, Peter Kudla, Anna and John J. Sie, Sharon Magness Blake and Ernie Blake, Ricki Rest, Nancy Sevo and Michelle and Tom Whitten. Other notables in attendance included past Global Ambassadors Chase Turner Perry, Kate Winfield, Sam Levin, Sophia Kay Whitten, Louis Rotella IV, Marcus Sikora, and Clarissa Capuano; and past Q-Award winners Tim Harris, Megan Bomgaars, Zack Gottsagen, Karen Gaffney, Sujeet Desai, Brad Hennefer, Jamie Brewer, and Frank Stephens.

Proceeds from GLOBAL’s Be Beautiful Be Yourself Fashion Show help underwrite life-changing and life-saving research and medical care at GLOBAL’s affiliates – the Crnic Institute for Down Syndrome, CU Alzheimer’s and Cognition Center, and the Sie Center for Down Syndrome at Children’s Hospital Colorado, all at the University of Colorado Anschutz Medical Campus.

“We are proud of all the important work we’ve been able to accomplish this year, including receiving NIH grants to study COVID-19 and Down syndrome and launching a clinical trial that aims to cure autoimmune disorders in people with Down syndrome,” says Dr. Joaquin Espinosa, Executive Director of the Crnic Institute. “We couldn’t do any of this without GLOBAL’s support and events like our fashion show help underwrite our Crnic Grant Challenge Grants and important advocacy work.”

The fashion show would not be possible without the generosity of GLOBAL’s Leadership Circle, sponsors, Ambassadors, Q-Awardees, models, Down syndrome partner organizations, celebrities, self-advocates and families.

To continue the work and fight for the down syndrome community, GLOBAL created a Q&A on COVID-19/Down syndrome, provided over 140 families and 42 Down syndrome organizations with COVID-19 Emergency Relief Global Grants, and supported legislation that fights discrimination against those with disabilities during crisis triage care situations.


Missed the event? It’s not too late to get involved! See highlights from the show .

To learn more about the Be Beautiful Be Yourself Fashion Show or to donate, visit www.bebeautifulbeyourself.org

To learn more about the Global Down Syndrome Foundation, visit www.globaldownsyndrome.org


About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (Global) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. Global has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. Working closely with Congress and the National Institutes of Health, Global is the lead advocacy organization in the U.S. for Down syndrome research and care. Global has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.

Global’s widely-circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. Global also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (facebook & twitter:@GDSFoundation)(instagram:@globaldownsyndrome).

NIH Award Funds Data Coordinating Center
for Down Syndrome Research

November 9th, 2020 by Global Down Syndrome Foundation

Scientists in lab, one holding a beaker

The new initiative will fuel collaboration and discovery about the biology of Down syndrome and its co-occurring medical conditions

Press Contacts:

Amanda Hilll Linda Crnic Institute for Down Syndrome | amanda.a.hill@cuanschutz.edu | C: 303.724.9907
Bobby Moulder Center for Data Driven Discovery in Biomedicine | moulderr@email.chop.edu | C: 484.258.8539
Hsiao-Ching Chou Sage Bionetworks | chou@sagebionetworks.org | C: 206.696.3663

DENVER, CO November 5, 2020 Scientists and data experts are joining forces to create the world’s first centralized platform for Down syndrome researchers to share, access, and analyze data. The goal of the new initiative, called the “Data Management and Portal for INCLUDE (DAPI) Project,” is to accelerate discoveries and advance medical care for individuals with Down syndrome. The National Institutes of Health (NIH) recently awarded a grant totaling $19.5M over five years to develop the center as part of the INCLUDE Project (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE).

The DAPI Project is co-led by Dr. Adam Resnick, Director of the Center for Data Driven Discovery for Biomedicine (D3b) at Linda Crnic Institute for Down Syndrome at the University of Colorado Anschutz Medical Campus, and Dr. Justin Guinney, Vice President of Computational Oncology at Sage Bionetworks. DAPI Project leaders will work closely with NIH INCLUDE Project staff to develop the center. This collaboration brings together strong expertise in Down syndrome research and open, data-driven science.

“We expect this new data center will be an impactful resource for the INCLUDE Project and the larger Down syndrome research community,” said Dr. Charlene Schramm, NIH Program Officer for the award. “The goal is to create a world-class portal for data sharing and analysis that will encourage innovative investigations into Down syndrome comorbidities across the lifespan.”

Dr. Melissa Parisi, one of the leaders of the NIH INCLUDE Project, added “The DAPI Project will combine data from existing research cohorts of individuals with Down syndrome with new cohorts. By building common data and shared analytic platforms, this project hopes to create a rich resource to help advance our understanding of these co-occurring conditions and support future therapeutic development.”

The INCLUDE Project is a trans-NIH initiative launched in 2018 to support research into conditions that affect individuals with Down syndrome and the general population. More than six million individuals living with Down syndrome have an increased risk of developing a wide range of medical conditions, such as certain autoimmune disorders and Alzheimer’s disease. At the same time, they are protected from some of the largest killers of the general population, including solid cancers and certain heart disease. Therefore, a key goal of the INCLUDE Project is to decode the underlying biology that alters these and many other co-occurring medical conditions in individuals with Down syndrome.

“Coordinated discovery efforts in this population not only have the potential to directly improve the lives of individuals with Down syndrome, but also to impact millions of other people affected by numerous related and co-occurring conditions,” said Dr. Espinosa of the Crnic Institute.

To enable these investigations, the mission of the DAPI Project is to create a world class platform for data sharing, data access, and integrative analysis in Down syndrome. The platform will empower scientists, physicians, and the community with tools to elicit evidence-based action in the laboratory, clinic, classroom, government, and society at-large.

“More and more, the scientific community is demonstrating the power of platforms to connect different communities with diverse areas of expertise and datasets to drive surprising discoveries and accelerated impact across a broad number of conditions in both children and adults,” said Dr. Resnick of D3b. “The DAPI Project will build on these efforts through the implementation of new technologies and platforms that will empower large-scale, diverse INCLUDE datasets on behalf of individuals with Down syndrome and other associated medical conditions and diseases.”

The DAPI Project is organized into three cores, roughly centered at each of the three partner organizations:

  • Data Portal Core.Led by Dr. Resnick at D3b, the Data Portal Core oversees the development of the web-based data portal, which will be the public-facing centralized platform for data sharing and analysis. Dr. Resnick and the team at D3b are recognized leaders in collaborative, data-driven science, with expertise in pediatric cancers and diseases and large-scale data visualization and analysis.
  • Data Management Core. Led by Dr. Guinney at Sage Bionetworks, the Data Management Core directs the overall data management practices for the DAPI Project, including protocols for data collection, governance, harmonization, processing, and sharing. Sage Bionetworks is a non-profit biomedical research organization devoted to responsible, open data-sharing practices, with broad expertise in computational and systems biology, as well as neurodegenerative diseases.
  • Administrative and Outreach Core.Led by Dr. Espinosa at the Crnic Institute, the Administrative and Outreach Core leads outreach, education, and stakeholder engagement efforts for the scientific and Down syndrome communities, as well as overall project management. Dr. Espinosa and the Crnic Institute team are leading Down syndrome researchers who also administer a large Down syndrome research program at the University of Colorado.

Additional experts from Centre Hospitalier Universitaire Sainte-Justine, Oregon Health and Science University, Oregon State University, Seven Bridges Genomics, and Vanderbilt University Medical Center will also collaborate with the DAPI Project team.

“We have created a truly exceptional team with diverse expertise to accomplish the mission of the DAPI Project,” said Dr. Guinney of Sage Bionetworks. “We are all excited and honored to work with the NIH, the Down syndrome research community, and each other on this new endeavor.”

DAPI Project operations began in early October, including efforts to identify existing Down syndrome cohorts and data already established by researchers, to engage in ‘listening tours’ to understand the needs of the researcher and Down syndrome communities, and to develop frameworks for data governance, standardization, and management. The DAPI Project team aims to release the first version of the public data portal in 2022, while continuing to refine and expand the platform thereafter.


About the Center for Data Driven Discovery in Biomedicine (D3b)

The Center for Data Driven Discovery in Biomedicine (D3b) is a translational biomedical research Center of Emphasis at the Children’s Hospital of Philadelphia Research Institute. D3b’s multi-disciplinary expertise is accelerating bench-to-bedside research on behalf of children diagnosed with cancer and other rare conditions. D3b’s seven collaborative units bring together experts in oncology and basic research, genomics, data science, bioinformatics, neurosurgery, and other research-related disciplines to discover breakthroughs for every child, every time, everywhere. To learn more about the D3b Center, visit https://d3b.center/.

About the Linda Crnic Institute for Down Syndrome

The Linda Crnic Institute for Down Syndrome is the first academic research center fully devoted to improving the lives of people with Down syndrome through advanced biomedical research, spanning from basic science to translational and clinical investigations. Founded through the generous support and partnership of the Global Down Syndrome Foundation, the Anna and John J. Sie Foundation, and the University of Colorado, the Crnic Institute administers a thriving Down syndrome research program involving over 50 research teams across four campuses on the Colorado Front Range. To learn more, visit www.crnicinstitute.org or follow us on Facebook and Twitter @CrnicInstitute.

About Sage Bionetworks

Sage Bionetworks is a nonprofit biomedical research and technology development organization that was founded in Seattle in 2009. Our focus is to develop and apply open practices to data-driven research for the advancement of human health. Our interdisciplinary team of scientists and engineers work together to provide researchers access to technology tools and scientific approaches to share data, benchmark methods, and explore collective insights, all backed by Sage’s gold-standard governance protocols and commitment to user- centered design. Sage is a 501c3 and is supported through a portfolio of competitive research grants, commercial partnerships, and philanthropic contributions. To learn more, visit https://sagebionetworks.org.

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer's and Cognition Center – all on the Anschutz Medical Campus.

GLOBAL's widely-circulated medical publications include GLOBAL Medical Care Guidelines for Adults with Down Syndrome, Prenatal Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. GLOBAL also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (facebook & twitter:@GDSFoundation)(instagram:@globaldownsyndrome).

Rachel, Marian, and Caterina

Exclusive $25 Tickets Gives a Remarkable Opportunity to
Experience this Inspirational and Star-studded Celebration

Buy Tickets to Be Beautiful Be Yourself Fashion Show Here

 

Press Contacts:

Anca Callacall@globaldownsyndrome.org | C: (720) 320-3832
Rejena Carmichaelrcarmichael@globaldownsyndrome.org | C: (240) 603-5494

 

DENVER, CO October 28, 2020 – Today, the Global Down Syndrome Foundation (GLOBAL) announced Multiplatinum Artist Rachel Platten, The Fray’s Isaac Slade, and The Ransom Notes will all perform at GLOBAL’s one-night only virtual Be Beautiful Be Yourself Fashion Show on Saturday, November 14, 2020. Platten will perform her iconic “Fight Song” and “Better Place,” while Slade will perform “How to Save a Life” in tribute to COVID-19 survivors with Down syndrome. The Ransom Notes will share their wonderful Folk-Americana-Bluegrass music all the way from Nashville.

For the first time ever, GLOBAL is offering tickets at only $25 that will provide an extraordinary opportunity for people from across the U.S. and the world to attend this award-winning, inspirational, and star-studded event.

An impressive list of over thirty celebrities will be supporting GLOBAL’s annual fundraiser including Music Legend Quincy Jones, supermodel Beverly Johnson, model Madeline Stuart, award-winning actors and brothers Matt Dillon and Kevin Dillon, award-winning actors John C. McGinley, Zack Gottsagen, Jamie Brewer, and Megan Bomgaars; motivational speaker Tim Harris, Denver Broncos Von Miller, Brandon McManus, Justin Simmons, Phillip Lindsay, and Jake Butt, reality show host Jeff Probst, Golfer Brad Hennefer, Buffalo Bills’ Harrison Phillips, R&B power couple Ronnie & Shamari DeVoe, and musician Sujeet Desai, among others already announced. This year’s Quincy Jones Exceptional Advocacy Awards will honor two powerful women: Grey’s Anatomy star Caterina Scorsone and Spanish model Marián Ávila. Celebrities are showing up in full force to support GLOBAL and honor the accomplished awardees.

Celebrities will virtually escort 25 beautiful models from 8 states and 3 countries down the runway. Model and 2020 GLOBAL Ambassador Walt Snodgrass is excited and ready, “I can’t wait to share my moves. It is so fun to be in the GLOBAL fashion show. But GLOBAL is also important for my health, and the health of everyone with Down syndrome.”

Chairs Jill and Lou Rotella III could not agree more. “The Global Down Syndrome Foundation just published the first-ever evidence-based medical care guidelines for adults with Down syndrome. They are delivering for our community on so many levels and they need our help now more than ever. We hope others will step up and support GLOBAL during this difficult time.”

Be Beautiful Be Yourself Fashion Show will also pay loving tribute to DeOndra Dixon, the inspiration behind GLOBAL’s highest honor, the Quincy Jones Exceptional Advocacy Award, who tragically passed away this month.

“Quincy Jones himself introduced us to DeOndra as one of the most articulate, irrepressible, magnetic people he had ever met,” says Michelle Sie Whitten, GLOBAL’s President and CEO. “GLOBAL has lost our talented, intelligent, feisty, beautiful, kind, loving, caring, pure and giving heart, DeOndra Dixon. Our Down syndrome community has lost a beacon of hope, a true leader, and role model whose aim was to always help others.”

To continue the work and fight for the Down syndrome community, GLOBAL created a Q&A on COVID-19/Down syndrome, provided over 140 families and 42 Down syndrome organizations with COVID-19 Emergency Relief Global Grants, and supported legislation that fights discrimination against those with disabilities during crisis triage care situations.

For more info on Be Beautiful Be Yourself Fashion Show on Saturday, November 14, 2020 at 6:30pm MST:

The event itself will be hosted on ClickBid, a virtual event platform with live stream, auction and donation options. A virtual access code will be sent to ticket holders and can be used on multiple devices.

To support GLOBAL’s work, please consider a donation.
To learn more, visit: www.bebeautifulbeyourself.org
To buy tickets, visit: https://bebeautifulbeyourself.org/buy-tickets/


 

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (Global) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. Global has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. Working closely with Congress and the National Institutes of Health, Global is the lead advocacy organization in the U.S. for Down syndrome research and care. Global has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.

Global’s widely-circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. Global also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (facebook & twitter:@GDSFoundation)(instagram:@globaldownsyndrome).

A Loving Tribute to DeOndra Dixon

October 24th, 2020 by Global Down Syndrome Foundation

A Loving Tribute to DeOndra Dixon

 

GLOBAL’s 2020 virtual Be Beautiful Be Yourself Fashion Show ended with a loving tribute to GLOBAL Ambassador DeOndra Dixon and brought us all to tears. GLOBAL and DeOndra’s family have set up the “DeOndra Dixon Down Syndrome Research Fund” to focus on the often neglected population of African Americans with Down syndrome. Anna and John J. Sie are generously matching $100K for this important research. DeOndra’s legacy will power us on. ALWAYS LOVED NEVER FORGOTTEN.

With the heaviest of hearts and full of sorrow, we are beyond sad that our beloved Global Ambassador DeOndra Dixon has passed. She is no doubt a true angel looking down on us, just as she was always an angel on earth.

The Global Down Syndrome Foundation’s highest honor, the Quincy Jones Exceptional Advocacy Award, was inspired by DeOndra and she was its first recipient. Quincy Jones himself introduced us to DeOndra as one of the most articulate, irrepressible, magnetic people he had ever met. DeOndra was brought into this world in a loving family who treated her like any other family member. They gave her the gifts of complete acceptance, confidence, and knowledge. They empowered her to graduate with a regular diploma from high school and to take life by storm, which, if you knew DeOndra, she absolutely did. Her parents, Annette and George Dixon, brother Jamie Foxx, sister Deidra Dixon, nieces Anelise and Corinne, dear friend Kim, and large extended family are beyond consolable, and we ask that you help us respect their privacy during this difficult time.

For Global, we have lost our talented, intelligent, feisty, beautiful, kind, loving, caring, pure and giving heart, DeOndra Dixon. Our Down syndrome community has lost a beacon of hope, a true leader, and role model whose aim was to always help others. She was a bright light in this world of ours.

DeOndra was our anchor. Her excitement for our Be Beautiful Be Yourself Fashion Show each year was palpable, and she often posted about her “secret moves” that she was practicing (and she did keep them secret right up until her stage call).

Over the years our fashion show became a reunion for Global’s “extended Down syndrome family” where DeOndra and her family, Quincy Jones, John C. McGinley, Amanda Booth, Beverly Johnson, Kyra Phillips & John Roberts, Ronnie & Shamari DeVoe, Matt Dillon, The Salah Foundation, Peter Kudla, Jules Haimovitz, Tomago Collins, Jay Mills, the Gold/Rest/Karsh/Perry, Vollbracht/Winfield, Capuano, Rotella, Sikora, Levin, Fonfara-LaRose, and Snodgrass families, our families, our tribes would come together over a weekend and celebrate life and people with Down syndrome.

Our extended family loves DeOndra deeply and unreservedly for who she is. Global and DeOndra’s family cannot imagine our fashion show without her, and so through our heartbreak and tears, we were able to honor her memory at our Be Beautiful Be Yourself Fashion Show with a loving tribute video and announce the “DeOndra Dixon Down Syndrome Research Fund” set up in conjunction with DeOndra’s family. The fund will focus on research to address the disparity of lifespan for African Americans with Down syndrome and will be matched up to $100,000 by a generous donation from Anna and John J. Sie.

Everyone at the Global Down Syndrome Foundation is in complete shock and full of grief. Please join us in honoring her and share your fondest memories of our beautiful and brilliant DeOndra Dixon. DeOndra is already sorely missed, but she will never be forgotten.

The Global Guideline is Published in the Print & Online Versions of JAMA,
Ensuring Clinicians Across the U.S. Have Access

Press Contacts:

Anca Callacall@globaldownsyndrome.org | C: (720) 320-3832
Rejena Carmichaelrcarmichael@globaldownsyndrome.org | C: (240) 603-5494

 

 

October 20, 2020 Denver, CO – After four years of coordination, compilation, and rigorous assessment and writing, the Global Down Syndrome Foundation Medical Care Guidelines for Adults with Down Syndrome© (Global Guideline) is complete and available at no cost.

The authors include the clinical directors of eight of the largest adult Down syndrome medical centers in the country – Advocate Health Care in Chicago, University of Pittsburgh Medical Center, Kennedy Krieger Institute at Johns Hopkins School of Medicine, University of Kansas Medical Center, University of Arkansas for Medical Sciences, and Denver Health in conjunction with the Anschutz Medical Campus School of Medicine at University of Colorado.

The first-in-kind Global Guideline was peer reviewed, edited, and published in the Special Communication section of the print and online October 2020 issue of JAMA, the Journal of the American Medical Association.

“We are so pleased that the quality of our guideline rose to the occasion of being published in JAMA, and we are deeply grateful to our families and self-advocates for pushing us to work on this difficult project,” says Michelle Sie Whitten, President & CEO of the Global Down Syndrome Foundation (GLOBAL). “Now we can focus on collaborating with other Down syndrome and disability organizations as well as medical institutions to ensure clinicians are following our Global Guideline and measuring outcomes.”

The Global Guideline is for clinicians and addresses nine medical areas: Behavioral Health, Dementia, Diabetes, Cardiovascular Disease, Obesity, Atlantoaxial Instability, Osteoporosis, Thyroid, and Celiac Disease.

It is made up of 14 recommendations and 4 statements of good practice. Some of the recommendations align with existing guidelines for individuals without Down syndrome, and two are markedly different. There were several questions associated with the recommendations that had no published research evidence, and therefore were answered based on the clinical expertise of the authors.

“It’s clear that the lack of Down syndrome research funding over the last 20 years has prevented us from easily or quickly creating these guidelines,” says Bryn Gelaro, LSW, Director of Adult Initiatives & Special Projects at GLOBAL. “We were fortunate to have expert authors and volunteers who helped identify important research needs that will bolster and better define our future Global Guideline recommendations.”

Author Amy Tsou, MD, from ECRI, an independent nonprofit and Evidence-based Practice Center, with support from Gelaro, helped spearhead the research methodology, which included PICO (Population/Intervention Comparison/Outcome) questions, the GRADE (Grading of Recommendations, Assessment, Development, and Evaluation) methodology, and focus groups from various stakeholders informed the final draft.

“I participated in the task force of over 40 self-advocates and family members that provided GLOBAL with the directive they needed to focus on adult care guidelines – even if it would be difficult and take a lot of time,” says Karen Gaffney, a nationally renowned athlete, GLOBAL Q-Awardee and spokesperson. “It was great to be able to participate in the week-long focus group of self-advocates and family members and see it all come together.”

“From the beginning, GLOBAL has been leading the way, empowering people with Down syndrome with improved care and health outcomes,” says mom Darlene Beals. “The Global Guideline is an important new resource for my 24-year-old son Alan, and I believe if anyone can get to the bottom of health disparities for African Americans with Down syndrome, it’s GLOBAL.”

Alan echoes his mom’s sentiments, “[I want to know] when to take thyroid medicine, once a day? How to live a healthy life in my own apartment and keep the apartment clean?” Alan is also concerned about doctors knowing how to pay Medicaid insurance.

While the Global Guideline is free of charge to any stakeholder, the copyright of the JAMA publication and of GLOBAL’s long-form publication prohibits the reproduction of the Global Guideline on any website or digital platform. However, printing and downloading for personal and clinical use is highly encouraged.

GLOBAL has support from over 50 local, national, and international Down syndrome organizations and several generous sponsors. By the end of 2021, GLOBAL plans to translate and distribute this transformative new resource into several languages, and to update and expand the Global Guideline every 6 years.

A webinar and Q&A with the renowned and expert authors will be held on Wednesday, October 21, 2020. To learn more or sign up, please click here.

The Global Down Syndrome Foundation Medical Care Guidelines for Adults with Down Syndrome Workgroup includes (in alphabetical order of lead and supporting authors):

  • Peter Bulova, MD: Associate Professor of Medicine, University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania
  • George Capone, MD: Director, Down Syndrome Clinic & Research Center, Kennedy Krieger Institute, Associate Professor of Pediatrics, Johns Hopkins School of Medicine, Baltimore, Maryland
  • Brian Chicoine, MD: Medical Director, Advocate Medical Group Adult Down Syndrome Center, Park Ridge, Illinois
  • Terry Odell Harville, MD, PhD, D(ABMLI) D(ABHI): Professor of Pathology and Laboratory Services, and Internal Medicine, Department of Pathology and Laboratory Services, and Department of Internal Medicine, Division of Hematology, University of Arkansas for Medical Sciences, Little Rock, Arkansas
  • Barry A Martin, MD: Associate Professor of Clinical Practice, Division of General Internal Medicine, University of Colorado School of Medicine, Anschutz Medical Center, Aurora, Colorado
  • Dennis McGuire, LCSW, PhD: Private Practice, Evanston, Illinois
  • Kent D. McKelvey, MD: Associate Professor, Rockefeller Chair in Clinical Genetics, University of Arkansas for Medical Sciences, Little Rock, Arkansas
  • Moya Peterson, PhD, APRN, FNP-BC: Clinical Professor, University of Kansas Medical Center, Schools of Nursing and Medicine, Kansas City, Kansas
  • Amy Y Tsou, MD, MSc: Evidence-based Practice Center, ECRI Center for Clinical Excellence and Guidelines, Plymouth Meeting, Pennsylvania; Staff Neurologist, Division of Neurology, Michael J Crescenz Veterans Affairs Medical Center, Philadelphia, Pennsylvania
  • Carl Tyler, MD, MSc: Director of Developmental Disabilities – Practice-Based Research Network, and Professor, Family Medicine and Community Health, Cleveland Clinic Lerner College of Medicine, Case Western Reserve University School of Medicine, Cleveland, Ohio
  • Michelle Sie Whitten, MA: President & CEO, Global Down Syndrome Foundation, Denver, Colorado
  • Bryn Gelaro, MA, LSW: Director of Adult Initiatives, Global Down Syndrome Foundation, Denver, Colorado
  • Michael Wells, BS: Formerly Research Coordinator, Developmental Disabilities – Practice-Based Research Network, Cleveland, Ohio

About the Global Down Syndrome Foundation
The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 150 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.

GLOBAL’s widely-circulated medical publications include GLOBAL Medical Care Guidelines for Adults with Down Syndrome, Prenatal Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. GLOBAL organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (Facebook, Twitter @GDSFoundation, Instagram @globaldownsyndrome).