By: Alex Barkhimer
Faint blue and yellow background featuring abstract round shapes. A large blue and yellow ribbon graphic design symbolizes Down syndrome awareness with text "October Down Syndrome Awareness Month.”
October is Down Syndrome Awareness Month! This month focuses on supporting the Down syndrome community by celebrating, raising awareness, breaking down barriers, and promoting policy and advocacy.
Did you know that some exciting policies supported by national Down syndrome organizations are currently making their way through Congress?
The Charlotte Woodward Organ Transplant Discrimination Prevention Act passed the House of Representatives in late September 2024. This monumental legislation prohibits discrimination against people with disabilities in need of an organ transplant. In other words, this act would prevent providers from denying an individual an organ transplant solely based on the fact that the person has a disability. This legislation is especially significant for the Down syndrome community as many individuals with Down syndrome face an increased risk for conditions that may require organ transplants (e.g., 50% of infants with Down syndrome have a heart condition). The Charlotte Woodward Organ Transplant Discrimination Prevention Act is a meaningful step towards inclusivity in healthcare!
The National Alzheimer's Project Act (NAPA) Reauthorization was passed by the House of Representatives in late September. Having cleared the Senate earlier this year, it is now heading to the president’s desk to be signed into law. This reauthorization will extend NAPA until 2035 and put focus on promoting healthy aging and reducing risk factors. The bill also emphasizes the inclusion of underserved populations, such as those with Down syndrome. This focus is critical as individuals with Down syndrome have a 90% lifetime risk of developing Alzheimer's disease. This high rate is mainly because people with Down syndrome have an extra copy of chromosome 21, which carries the amyloid precursor protein (APP) gene strongly associated with Alzheimer’s disease.
Below is a non-exhaustive list of my favorite organizations, groups, and hashtags to follow to learn more about the Down syndrome community throughout the month of October and beyond!
National Down Syndrome Society on Facebook (also on Instagram and TikTok)
National Down Syndrome Congress on Instagram (also on Facebook)
Black Down Syndrome Association
Happiness is Down syndrome on Instagram
#DownSyndromeAwarenessMonth #DownSyndromeAwareness #Downsyndrome
References
Alzheimer’s disease toolkit. National Down Syndrome Society (NDSS). (2024a). https://ndss.org/alzheimers-disease-toolkit#p_1327
Charlotte Woodward organ transplant discrimination prevention act passes house. National Down Syndrome Society (NDSS). (2024, September 24). https://ndss.org/news/charlotte-woodward-organ-transplant-discrimination-prevention-act-passes-house-0
Delany, D. R., Gaydos, S. S., Romeo, D. A., Henderson, H. T., Fogg, K. L., McKeta, A. S., Kavarana, M. N., & Costello, J. M. (2021). Down syndrome and congenital heart disease: perioperative planning and management. Journal of Congenital Cardiology, 5(1), 1–14. https://doi-org.proxy2.library.illinois.edu/10.1186/s40949-021-00061-3
Down syndrome and alzheimer’s disease. Alzheimer’s Association. (2024, July). https://www.alz.org/media/documents/alzheimers-dementia-down-syndrome-ts.pdf
National down syndrome society (NDSS). National Down Syndrome Society (NDSS). (n.d.). https://ndss.org/
