National Organizations
Global Down Syndrome Foundation
Global is a foundation that is doing huge things in the Down syndrome world, and you need to know all about them.
It was founded by my personal hero and fellow Trisomy 21 mom, Michelle Sie Whitten. What Michelle has created out of love for her daughter, Sophie, is tremendous and I highly encourage you to become an active & engaged Global member.
Their primary focus is the support of the Linda Crnic Institute of Research: “the first academic home in the United States committed solely to research and medical care for people with Down syndrome. Since Down syndrome is the least-funded genetic condition in the United States, fundraising and government advocacy to correct the alarming disparity of national funding for people with Down syndrome is a major goal.”
Spencer and I visited Crnic November 2022. As a medical mom of a child with Down Syndrome, I was absolutely blown away to know all of the work they are doing that will ultimately benefit Annie in her lifetime. Not only is this institution the expert on co-conditions of Down syndrome, but their love for our children and passion to see their health improved is what makes it uniquely valuable. Global also founded the Sie Center for Down Syndrome, a pediatric specialty clinic located at Children’s Colorado that is named after Michelle’s parents, Anne and John Sie. Annie is a new patient at this clinic as of August 2023, and you can look forward to a blog breakdown of our experience there. We are so proud to be established patients!
Be sure to follow them on social media and become a member for regular emails full of fantastic information.
Global Down Syndrome Foundation is out of Colorado.
National Down Syndrome Society
NDSS was founded in 1979 after the Goodwin family welcomed son Carson to the world. Every October we celebrate Down Syndrome Awareness month and we can thank NDSS for this! If you have created a team and joined a “Buddy Walk” you can also give credit to NDSS. Their vision is for the improvement of human rights for individuals with Down Syndrome and a more inclusive society. NDSS is big on advocacy for legislative policy. Two that are particularly meaningful to our family and have been in the spotlight recently are: the Charlotte Woodward Organ Transplant Discrimination Prevention Act and “The Words Matter Act” (This bill removes outdated terminology in specified statutes by replacing references to mentally retarded and mental retardation with intellectual disability)
One of the best resources on their website is “find my local DS organization” map. This map includes an entire view of the United States to search geographically! Find it Under “Resources and Support” > “Local Referrals” > “Local Support”
NDSS is based in Washington DC.
Down Syndrome Diagnosis Network
DSDN has made the most profound impact on my life as a mom of a child with Down Syndrome. When we were given Annie’s diagnosis, I did not want to google, I wanted to find families on social media to see the true life of a DS parent.
It is hard to imagine where I would be if the mother I messaged had not told me about DSDN. She told me to join the pregnancy “support group” and I was honestly skeptical. Once I signed up, that “support group” led me to many of the deepest friendships I have today. It was so incredible to hear what prenatal care looked like for other moms -- to know what to ask for, to learn tons of solid medical information that I never would have found otherwise, and to have the chance to talk and laugh with women who truly understood all of the emotions I was experiencing.
DSDN’s focus and mission is connecting parents as well as educating medical providers during the diagnosis stage.
It is hugely important work and they do an excellent job facilitating these Facebook groups and hosting retreats that allow parents to learn and grow together.
DSDN is out of Minnesota.
National Down Syndrome Congress
I do not have a great amount of personal experience with NDSC, but I do want to be sure to list them as a major organization that was founded in 1973.
Resources I found notable on their website are: webinars on all sorts of topics made for parents, Adult Sibling Toolkit -- intended to help siblings learn how to advocate and care for their sibling, a listing of all DS medical clinics in the US, and links under “Ages & Stages” with access to the DS growth charts.
NDSC is out of Georgia.
Down Syndrome Medical Interest Group
“DSMIG is a group of health professionals committed to promoting the optimal health care and wellness of individuals with Ds across the lifespan. This may include: physicians, scientists, psychologists, nurses, genetic counselors, educators, therapists, clinic coordinators and related health professionals.”
This group was founded in 1988 when Dr Bonnie Patterson, Director of the renowned Down syndrome clinic at Cincinnati Children’s, called a meeting of 14 professionals. DSMIG (pronounced “diz-mig”) holds annual meetings and has a formal membership process. DSMIG is committed to the following:
1- Educate professionals on the latest research and comprehensive
2- Facilitate networking among health professionals caring for individuals with Ds
3- Support development of Ds clinics
4- Identify & disseminate best practices of care.
Down Syndrome Affiliates in Action
“DSAIA is a membership association whose members are local, state, and regional Down syndrome associations. Long before DSAIA, staff and volunteers recognized how important it was to share experiences, exchange program materials, and find ways to learn from each other”
This organization is not for families directly, but it absolutely impacts us indirectly.
I love that there is a resource to keep the small organizations healthy and supported as each shares a common goal! DSAIA has an accreditation program that allows these local organizations to make sure they are up to par. I love DSAIA’s collaborative effort that really pushes the message that it is not organization against organization, but rather, a mindset of helping each be the best for their areas families!
DSAIA is located in Montana.
LuMind IDSC Foundation
““The LuMind Foundation was founded by two families in 2004 soon after the decoding of the human genome, which opened the door to biomedical research in the field of cognition research for individuals with Down Syndrome.
It soon became the largest non-govermnetal source of funding in the US for this research granting to top universities including Stanford, Hopkins University, and University of California San Diego.”
IDSC: “The International Down Syndrome Community began informally in 2008 when a group of moms from around the world answered a need in the DS community to provide a safe forum for parents to discuss issues ranging from prenatal testing and diagnosis to grief to medical journeys and to find peer-to-peer support and acceptance”
LuMind and IDSC merged in 2019 and are based out of Massachusetts.
