On May 20th, a gathering in New York City sparked something powerful — inspiration, purpose, and renewed energy among self-advocates in the Down syndrome community.
As they listened to researchers share timely updates on the link between Down syndrome and Alzheimer’s disease, the message was clear: 90% of adults with Down syndrome will develop Alzheimer’s by age 65 — but research is advancing, and hope is within reach.
What stood out was how deeply the self-advocates in the room connected with LuMind’s research, policy and community building efforts — and how passionately they committed to sharing it.
Karen Gaffney, self-advocate, president of the Karen Gaffney Foundation, a member of LuMind IDSC Board, and one of the evening’s speaker shared: “We have come way too far overcoming obstacles and failures in our life to lose it all to Alzheimer’s Disease. We have to burst that big ugly cloud, and we have to burst it now so that we can continue to show the world that Down syndrome is a life meant to be lived.”
John Cronin, self-advocate and co-founder of John’s Crazy Socks shared his reaction after the event by stating: “This work matters. It helps my friends. It helps me.”
These advocates aren’t just talking — they are taking action. One was featured in our videos educating the community about what to expect from participating in research. Both are now speaking across the country, spreading awareness and encouraging others to get involved in LuMind’s efforts.
Their voices are powerful. Their leadership is real. And they are helping drive the momentum we need.
Want to make a difference too?
- Learn about participating in Alzheimer’s research.
- Read more about our May 20th event.
- Purchase your copy of the newly released Down Syndrome Out Loud book to discover the remarkable accomplishments of young adults in our community.
Let’s follow their lead. Let’s keep moving forward — together.
