World Down Syndrome Day takes place on March 21, the twenty-first day of the third month of the year to signify three copies of the twenty-first chromosome, which defines Down syndrome or trisomy 21. In previous years I sent Hope to school with homemade awareness cookies or dressed us all up in blue and yellow to celebrate. At least once I signed us up for the National Down Syndrome Society (NDSS) 3.21-mile challenge but a snowstorm chased our group of friends back to our respective houses and we never got around to finding another common time to meet. That was pre-pandemic life for you, always taking our tomorrows for granted.
So in the spirit of virtual advocacy, this year we accepted the new NDSS 32.1-mile challenge, which kicks off tomorrow and runs for three weeks. Matt will be rowing his way to 32.1 miles and I’ll be on our Peloton bike, riding under the #Racingfor321 tag. (If you’re on Peloton, please join us!!!)
What does it all mean? For the kids, I hope World Down Syndrome Day means a fun opportunity to celebrate the extraordinary life Hope leads just by being herself. For us, it means community and a financial commitment to our country’s leading human rights organization for individuals with Down syndrome.
Sitting in front of the 117th Congress is the Charlotte Woodward Organ Transplant Discrimination Prevention Act, named for advocate and NDSS Community Outreach Associate Charlotte Woodward. New Jersey is one of only sixteen states with laws prohibiting organ transplant discrimination on the basis of disability, making federal legislation all the more critical, so please consider reaching out to your representatives in support. Because Ms. Woodward herself received a heart transplant she is alive to champion this type of work, which most people wouldn’t have the courage to do. We are grateful for her life!!
Spreading knowledge that dispels discrimination and fear is free and goes a very long way to a more equitable world for our beloved Hope and her amazing friends. Another way you can support NDSS and the Down syndrome community as a whole is to consider registering for the distance challenges, buy a ticket for the annual gala and auction taking place on March 4, or make a donation to NDSS.
Hope thanks you from the bottom of her repaired little heart!