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September 2021 Newsletter

September 30th, 2021 by Ben Enyart

Music Videos & Advocacy – Your September Newsletter

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August 10th, 2021 by Global Down Syndrome Foundation

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August 10th, 2021 by Global Down Syndrome Foundation

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Caterina Scorson and family

Caterina Scorsone and family (photo by Rebecca Couresy)

Actress, advocate, and mother of 3, Caterina Scorsone shares how having a child with Down syndrome challenged her to open her mind. What she discovered changed her life.

Best known for her role as Dr. Amelia Shepherd on ABC’s Grey’s Anatomy, award-winning actress Caterina Scorsone has spent her career playing different characters by learning how to empathize and connect with people, a skill she developed as a child actor in Canada. In November of 2016, Caterina received unexpected news and she had to prepare for her most challenging role yet: mother to a child with Down syndrome.

When Caterina learned that her daughter, Paloma, “Pippa,” had Down syndrome, she recalls feeling scared and intimidated by the diagnosis. “I have always been the type of person who tackles challenges with careful planning and thoughtful preparation, and this, I was completely unprepared for,” Caterina explains. “And that caused me so much anxiety and worry. What type of mother did that make me, not knowing how to care for my own child?”

Honing her years of practice studying how people think, feel, and act, Caterina realized she had all the tools she needed to be a good mother to Pippa. “No one is ready for a Down syndrome diagnosis for their child, but they become ready one way or another, because they have to.

“Pippa has taught me how to be a better mother to all my children, and to be a better person in general. A better friend, sister, daughter, colleague,” says Caterina, who is using her public platform to share her parenting experiences with the world.

A rising advocate in the Down syndrome community, Caterina hopes to spread awareness to society and serve as a source of information and support for families.

Caterina Scorsone with her family

Caterina Scorsone with her family (photo by Rebecca Couresy)

Motherhood

Today, Caterina is a mother to three beautiful children: Eliza (9), Paloma aka “Pippa” (4), and Lucinda aka “Lucky” (19 months). She says that while they are all very different from each other, the thing all her children have in common is their very distinct and strong personalities. The proud mother describes Eliza as the problem-solver and creative thinker, Pippa as insightful and determined, and Lucky as fun-loving and strong.

Caterina shares how her ever-changing and ever-growing journey as a parent has continued to challenge her and teach her important lessons.

“When I was pregnant with my first, Eliza, I was so excited and ready to be a mom. I wanted to make sure I was the best mom I could be, so I read all the books and articles I could find on parenting. It was like preparing for a role. By the time Eliza was born, I felt really prepared.

“Three years later, when Pippa was born, the whole game changed. When we received her Down syndrome diagnosis, I was scared. I was intimidated by my lack of knowledge and skill in this area. I didn’t know what her needs would be or how I would meet them. I worried about what the future would hold for her.”

Searching for support and information, Caterina was frustrated by the lack of resources available to new parents of children with Down syndrome. She recalls how, at first, she allowed her frustration to take over, and her mind became overwhelmed with thoughts of fear, worry, and doubt. “My mind was stuck in the future, worrying about all the what-ifs, that I was missing the what-is right in front of me,” Caterina explains.

Caterina realized she needed to put her worries aside and move her focus to the real priority – which was to be there for her children. Shifting her focus to Eliza and Pippa, Caterina’s worries transformed into curiosity. She observed how the two interacted with each other and how both were developing and growing, in their own ways, at their own speed.

Caterina describes Pippa as very determined, insightful, sensitive, fun, and honest. “One of the most beautiful things about Pippa is how connected she is to her experience. If she wants to do something, she is very excited to do it and thoroughly enjoys it. And if she doesn’t want to do something, she is very connected to her gut and knows what she doesn’t want. Pippa’s self-acceptance frees her limiting beliefs, like worry about other people’s expectations of her.

“Once I embraced the diagnosis, I was able to appreciate what it invited into our lives, which was a beautiful shift in perspective that enhanced our whole way of living. Pippa has forced me to leave behind preconceptions about who people are and what they should or should not be like. It allowed me to see every person I encounter as completely unique, no longer subjected to some sort of list of standards that people are either succeeding or failing to live up to. I had to radically reconsider everyone’s individuality, including my own.”

In December of 2019, when Caterina had her third daughter, Lucinda, “Lucky,” she felt more prepared than ever before. Caterina knew this newfound life perspective would instill important values in all her kids and that she could handle any challenge that comes their way with grace. Similar to the creative environment she grew up in, Caterina says the family enjoys lots of dressing up and dance parties together in their home.

Pippa scorsone daugther to Caterina Scorsone

Pippa Scorsone daugther to Caterina Scorsone (photo by Rebecca Couresy)

Giving Back

“When Caterina took to Instagram to announce Pippa’s birth and diagnosis with excitement, we could tell right away that she was one of us and that she would be a powerful voice in the Down syndrome community,” says GLOBAL President and CEO, Michelle Sie Whitten. “After developing a relationship with her over the next several years, and learning about her passion for our research, we proudly selected Caterina as the recipient of our 2020 Quincy Jones Exceptional Advocacy Award, GLOBAL’s most prestigious honor.”

Due to COVID-19 restrictions, Caterina accepted the award virtually at the 2020 Be Beautiful Be Yourself Fashion Show. Caterina was proud to be a co-awardee with Spanish model Marián Ávila, who is dedicated to getting people with Down syndrome more represented in the media. “Marián is such a beautiful person inside and out. After the show, she even mailed me a box of ‘Congratulations’ chocolates! It was such a personal, sweet touch,” Caterina remembers.

As a GLOBAL advocate and spokesperson, Caterina aims to use her public platform to raise awareness about Down syndrome and help new parents navigate the diagnosis. “I want to help new parents feel less scared and more excited about their child’s future, knowing that they have support,” she says.  “My hope is that as a culture and a society, that we can learn to lead with the person, not the diagnosis. That we can recognize the humanity in each one of us. The Global Down Syndrome Foundation embodies that vision.”

One of the elements of GLOBAL’s work that Caterina feels most passionate about is the breakthrough research. “GLOBAL’s research arm, the Crnic Institute, published a groundbreaking study on how the overactive immune system in people with Down syndrome is part of a different disease spectrum, which opens up so many opportunities for research,” Caterina explains. “It’s really hard as a parent to make sound medical decisions for your child when the information that your doctor has is often not complete based on the genetic makeup of our kids with Down syndrome. It’s priceless to have the full picture of information.”

Caterina encourages families who are interested in advocacy to read about the important breakthroughs in research on GLOBAL’s website and to join them in their fight for increased federal funding for Down syndrome research.

Pippa Scorsone daugher of Caterina Scorsone

Pippa Scorsone daugher of Caterina Scorsone (photo by Rebecca Couresy)

“Down syndrome is just one aspect of the deep and multi-faceted human beings that have the condition,” Caterina continues. “I’ve found that the key to being a good parent, and a good person, is in curiosity. Be curious about your children and who they are. Be curious about yourself. Be curious about what scares you. Lead with the search for knowledge and understanding, rather than judgement, and you will be surprised by how much you will continuously learn about the world.”

To learn more about Caterina and to watch her inspiring Quincy Jones Award speech, visit www.bebeautifulbeyourself.org/caterina-scorsone

To access GLOBAL’s informative resources on research and medical care, visit www.globaldownsyndrome.org/about-down-syndrome/resources


Like this article? Join Global Down Syndrome Foundation’s Membership program today to receive 4 issues of the quarterly award-winning publication, plus access to 4 seasonal educational Webinar Series, and eligibility to apply for Global’s Employment and Educational Grants.
Register today at downsyndromeworld.org!

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 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).

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).

From Down Syndrome WorldTM 2020 Issue 2 of 4

AMID A WORLD-WIDE PANDEMIC, THESE SCIENTISTS HAVE FOUND THEMSELVES IN A UNIQUE POSITION TO HELP, THANKS TO YEARS OF STUDYING THE EXCEPTIONAL BIOLOGY OF PEOPLE WITH DOWN SYNDROME.

This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door!

CONTRIBUTING IN A MEANINGFUL WAY to the body of science and medical practice surrounding an unprecedented world-wide pandemic is not something most people ever get the opportunity to do. It certainly was not what Executive Director of the Linda Crnic Institute for Down Syndrome, Dr. Joaquín Espinosa, and his team of scientists were thinking about in early March 2020.

During this time, the University of Colorado Anschutz Medical Campus (CU) shut down all research operations, locking scientists out of their buildings and laboratories in response to and to prevent the spread of the novel coronavirus (COVID-19) pandemic. Thankfully, Dr. Espinosa and the Crnic Institute team had their valuable experiments and supplies already gathered and stored away safely. With numerous grants from the National Institutes of Health (NIH), the National Science Foundation, and others, the team had plenty of work that could be performed remotely – analyzing data, writing up results for scientific journals, and preparing new proposals for funding.

Their biggest worry was something they could not work on remotely – the delay of their NIH clinical trial grant to treat autoimmune diseases in people with Down syndrome. In 2016, shortly after launching the Crnic Institute Human Trisome ProjectTM (HTP), the Crnic Institute made one of the most important scientific discoveries – Down syndrome can and should be characterized as an immune system disorder.

In particular, they discovered that an immune system pathway called the “interferon pathway” was “lit up” in people with Down syndrome pretty much 24/7, versus in typical people where it is only turned on when they are fighting a virus or infection and then it turns off.

The constant taxation of the immune system in people with Down syndrome creates low intensity inflammation that over time probably contributes to the co-occurrence of various diseases, including dementia. The Crnic Institute discovery was even more consequential because there are FDA-approved drugs that turn down the interferon pathway in typical people. Crnic Institute scientists were about use one of these FDA-approved drugs, a JAK inhibitor called tofacitinib, in an unprecedented clinical trial for adults with Down syndrome when the pandemic forced lab closures around the world.

AN “AH HA” MOMENT
As serendipity would have it, two days into quarantine, the Crnic team was doing a quick review of the research literature on COVID-19. Their findings revealed something that was both shocking and yet made perfect sense – it appeared that hospitalized COVID-19 patients were displaying many of the same patterns of immune system dysregulation that the Crnic Institute team had spent years studying, analyzing, and annotating in people with Down syndrome.

In COVID-19, the body’s antiviral defense system, which utilizes the interferon pathway, is sent into overdrive, causing the release of high levels of inflammatory signaling molecules known as cytokines. In COVID-19 and other viral infections, this “cytokine storm” is associated with respiratory distress, heart damage, and higher mortality rates. Similarly, people with Down syndrome have higher-than-normal levels of interferon signaling and often display more of a mini cytokine storm, even without a viral infection. Crnic Institute scientists believe this could contribute to many of the hallmarks of and co-occurring medical conditions associated with Down syndrome and are working to understand those connections.

Within a week, Dr. Espinosa and the Crnic Institute were one of a handful of research teams allowed back, with COVID-19 safety measures, into their labs to work on COVID-19 treatments for the general populations and to understand the connection and possible affects and treatments on people with Down syndrome.

Today, Dr. Espinosa is the leader of an international consortium looking at JAK inhibitors to treat COVID-19. The treatment is one of several clinical trials that Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious Disease at the NIH, has been supporting in the United States. The international consortium includes labs from the United States, China, Italy, France, Spain, Argentina, Mexico, Canada, Germany, and Denmark.

COVID-19 COULD BE MORE SEVERE FOR PEOPLE WITH DOWN SYNDROME
In reviewing the COVID-19 literature, Crnic Institute scientists also realized that people with Down syndrome should probably be considered a “high-risk” group for COVID-19. “High risk” means a person who gets COVID-19 has a higher probability of experiencing more severe illness than a member of the general population without other risk factors. This idea rests on the basis that the strength of the cytokine storm in COVID-19 correlates with disease severity and outcomes, and that people with Down syndrome will be more likely to develop a stronger, more prolonged cytokine storm due to higher levels of baseline interferon signaling. Although the direct studies of COVID-19 in Down syndrome needed to prove or disprove this idea have not yet been performed, ample supporting evidence already exists in the context of other viruses and in our basic understanding of immunology in Down syndrome.

It is also important to consider that people with Down syndrome have increased susceptibility to bacterial pneumonia. Although seemingly unrelated, it has been well documented that pandemics of respiratory viral infections are followed by a surge in cases of bacterial pneumonia, and that a large portion of deaths are actually attributed to secondary bacterial infections. Children with Down syndrome have much higher rates of viral pneumonia and bacterial pneumonia, with the latter being a leading cause of mortality in adults. Taken together, these known phenomena suggest that a person with Down syndrome who contracts COVID-19 would have an increased risk of also acquiring bacterial pneumonia.

PUTTING TOGETHER ALL THE EVIDENCE:
#1 – People with Down syndrome have higher levels of interferon signaling.

#2 – Once infected, people with Down syndrome have an increased risk of experiencing a stronger cytokine storm and thus a more severe case of COVID-19.

#3 – Both during and after infection with SARS-CoV-2, people with Down syndrome will be more likely to also contract bacterial pneumonia.

It is important to note that these are hypotheses and predictions based on existing evidence outside of COVID-19 and should be taken into consideration with caution. The studies needed to fully understand COVID-19 in people with Down syndrome are still just starting to get underway. The good news is, there are people with Down syndrome, with and without underlying conditions, who are surviving COVID-19. We simply need more data and to better understand this virus before we can definitively come to conclusion.

HOW DOWN SYNDROME RESEARCH FROM THE CRNIC INSTITUTE IS BEING UTILIZED TO STUDY AND TREAT COVID-19
Since March, every member of Dr. Espinosa’s team, from the basic scientists to the clinical researchers, and even the administrators, have been utilizing their unique skills and knowledge gained while working in Down syndrome to rapidly advance COVID-19 research at CU.

For example, Crnic Institute scientists immediately started testing potential therapeutics for the COVID-19 cytokine storm in their mouse model of Down syndrome, nicknamed Dp16. They weren’t actually exposing the Dp16 mice to SARS-CoV-2; they didn’t need to. Instead, the scientists could activate the immune system and stimulate a cytokine storm much like what is seen in COVID-19, simply by using a molecule that tricks the immune system into sensing a virus when there isn’t one. Crnic scientists then treat the mice with JAK inhibitors targeting the interferon signaling pathway that is chronically activated in people with Down syndrome and that drives the cytokine storm in COVID-19. The data resulting from these experiments will be extremely valuable because it can be interpreted and utilized in two contexts: COVID-19 and Down syndrome.

FIGHTING COVID-19 TOGETHER
Who would have ever guessed that Down syndrome research and the discovery that interferon signaling is chronically activated in people with Down syndrome would one day so greatly impact the science and research behind a historic, global pandemic? This meaningful contribution to the body of science and medical practice surrounding COVID-19 is something the Down syndrome community should be proud to be part of. Together, this community of researchers, self-advocates, families, and supporters can clearly make positive scientific impacts not only for people with Down syndrome, but also for the entire world.

THE CRNIC INSTITUTE HUMAN TRISOME PROJECTTM IN ACTION AGAINST COVID-19
At the beginning of the quarantine, CU assembled a centralized team tasked with rapidly creating a biobank to collect blood and other biological samples from COVID-19 patients. These samples would then be administered to researchers with approved projects. This model essentially replicates one of the Crnic Institute’s flagship research initiatives, the Crnic Institute Human Trisome ProjectTM (HTP). The HTP is generating multiple layers of “omics” data (think big data from sequencing all of someone’s DNA and RNA and measuring all their proteins, metabolites, immune cells, and much more) on hundreds of people with and without Down syndrome in order to understand the hallmarks of and co-occurring medical conditions associated with Down syndrome. Having heard about the Crnic Institute’s HTP and Biobank, the CU COVID-19 team reached out to Crnic scientists to tap into their expertise. The Crnic team shared detailed protocols and helped advise the CU team during the development of the CU COVID-19 Biobank.

As part of a synergized endeavor with the COVID-19 Biobank, leading researchers at CU also partnered with Dr. Espinosa and the Crnic team to replicate the experimental platform from HTP and apply it to COVID-19. The parallel effort by CU to apply the HTP platform to COVID-19 has been aptly dubbed “The COVIDome Project,” and Crnic scientists are leading the ongoing data generation to advance COVID-19 research for better diagnostics and therapeutics.

The Crnic team is also partnering with a national COVID-19 collaborative group to specifically study COVID-19 in people with Down syndrome. As explained earlier in this article, so much is yet unknown about COVID-19 in Down syndrome and numerous studies are needed to understand its impacts. The team is working with top data scientists at CU to identify differences in risk factors, symptoms, clinical course, immunological parameters, response to various treatments, and outcomes and long-term effects of COVID-19 in people with Down syndrome. Alongside these efforts, the Crnic team is also studying individuals with Down syndrome who have recovered from a SARS-CoV-2 infection as part of the HTP, in order to assess changes induced by COVID-19 across all the layers of omics data. Together, Crnic scientists hope these efforts will advance our understanding of interferon signaling and the cytokine storm in COVID-19 and Down syndrome and
inform the development of customized preventative and therapeutic solutions.


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