2021 Giving – GLOBAL Among Top Nonprofits in Colorado to Support This Fall
October 30th, 2021 by Global Down Syndrome Foundation
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COVID-19 Emergency Relief GLOBAL 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.”
11.14.20CTRNASCSNETCAN
November 14th, 2020 by Global Down Syndrome Foundation
Exclusive Coverage on ET Canada
NIH Award Funds Data Coordinating Center for Down Syndrome Research
November 9th, 2020 by Global Down Syndrome Foundation
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 Children’s Hospital of Philadelphia, Dr. Joaquin Espinosa, Executive Director of the 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 https://medschool.cuanschutz.edu/linda-crnic-institute 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).
Multiplatinum Artist Rachel Platten, The Fray’s Isaac Slade, & The Ransom Notes To Perform At Global’s Be Beautiful Be Yourself Fashion Show
October 28th, 2020 by Global Down Syndrome Foundation
Exclusive $25 Tickets Gives a Remarkable Opportunity to
Experience this Inspirational and Star-studded Celebration
Press Contacts:
Anca Call | acall@globaldownsyndrome.org | C: (720) 320-3832
Rejena Carmichael | rcarmichael@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 learn more, visit: www.bebeautifulbeyourself.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).
A Team Effort: Why This Award Isn’t Just For Me
October 13th, 2020 by Global Down Syndrome Foundation
A Team Effort: Why This Award Isn’t Just For Me
By: Ashley Sparhawk, 2020 recipient of the Colleen Barrett Award for Administrative Excellence

Ashley Sparhawk, 2020 recipient of the Colleen Barrett
Award for Administrative Excellence
Thank you so much to Colleen Barrett for selecting me to be this year’s recipient. I am thrilled to be named the 2020 Denver Admin Awards recipient of the Colleen Barrett Award for Administrative Excellence. I was so humbled just to be nominated, so it is truly an honor to receive this prestigious award in your name.
Thank you Admin Awards for putting on such a fun and meaningful event! It’s been a tough year, but you all pulled off a great event. When Christine Fiero (2018 recipient of the Colleen Barrett Award for Administrative Excellence) brought the Admin Awards to my attention by nominating me last year, I knew I had to be involved (win or not) with this fantastic and unique organization for years to come. The Admin Awards is such a wonderful tribute to administrative professionals’ hard work and importance around the country.
I would like to recognize all the talented and hardworking admins nominated (especially the other Colleen Barrett finalists Bonnie Azevedo and Lori Lucero, plus my everyday partner at Global, Marisa, also a finalist in the Office Manager of the Year category). I’m honored to call you my peers.
Thank you everyone who nominated me! I owe this to you.
I want to dedicate this award to my boss, Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation. I would not be here if it weren’t for you.
Michelle works tirelessly day in and day out to ensure that people with Down syndrome are given better lives through education, research, medical care and advocacy. It’s such an honor to work alongside you every day, to learn from you and to help transform the lives of people with Down syndrome.
Seven years ago, Michelle took a chance on me. Listening to and learning from Michelle over the years has been the most amazing and rewarding experience. She’s taught me how to be a strong woman in the workplace, a thoughtful colleague and how to always push for the best.
Michelle has this great gift of pinpointing the best qualities in her staff, maximizing on what they’re good at and elevating those talents to then help the greater good of our organization to ultimately to help individuals with Down syndrome.
I really wanted to make a difference in the world and I found that at the Global Down Syndrome Foundation. I love what I get to do every day. We work so hard, but we also have fun. And of course nothing beats that rewarding feeling of knowing that we are truly making a difference.
Thank you to the Admin Awards and Colleen Barrett for this honor. I will continue to strive to be a strong woman in the workplace, provide excellent customer service to my colleagues and constituents, and embody this award’s spirit.
Most of all thank you Michelle. I’m honored to call you my colleague, my friend, my role model.


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