Hope in Focus, a nonprofit 501(c)3 rare disease advocacy organization based in Ledyard, Connecticut, is partnering with the Denise D’Ascenzo Foundation Walk to Fight Rare Diseases taking place on Saturday, April 25 at 10:00 a.m. at Quinnipiac University in Hamden, Connecticut. To contribute to, or walk with Hope in Focus, visit https://runsignup.com/Race/CT/Hamden/DeniseDAscenzoWalk
The 2-mile walk kicks off at 10:00 a.m. The registration fee to join the walk is $32. Participants can register on the day of the event or in advance online. Participants may also join to walk virtually, and JB Sports will mail them a shirt and bib.
As a participant in this event, Hope in Focus will receive 100 percent of the registration fees and fundraising from donors to help support its mission of outreach to the Leber congenital amaurosis (LCA) and rare inherited retinal disease community.
“We’re excited to join the Denise D’Ascenzo Foundation in raising awareness and funds for rare diseases. As a small organization supporting a rare community, we find it challenging to reach our community and supporters and host events of this magnitude. This walk makes it possible for all of us representing rare diseases in Connecticut to band together, making it easier and fun to raise awareness of rare disease issues in general, while raising funds for our individual causes,” said Hope in Focus Executive Director Courtney Coates.
“Today, 95 percent of all rare diseases still lack an FDA-approved treatment, and only one in two have a research or rare disease group to support them. It’s a tough journey for organizations like Hope in Focus, and we are grateful to the Denise D’Ascenzo Foundation and JB Sports for creating this opportunity for us to come together. We welcome anyone who can join us, virtually or in-person, or with a contribution of any amount,” said Coates.
The event was established by the Denise D’Ascenzo Foundation, which is dedicated to supporting advances in medicine and health, promoting responsibility in the media, and assisting those facing physical and mental challenges, while encouraging openness, courage, and kindness in all endeavors.
Hope in Focus founder Laura Manfre and her son Luca will participate in the event. Because the zebra symbolizes rare diseases, Luca will wear a zebra suit as he walks. Manfre’s daughter Sofia, was diagnosed with LCA as a child and was the motivation for founding Hope in Focus. Today, the organization serves a global community of families and individuals living with this rare blinding disease through community outreach, education, and funding to advance treatments. Website to register or donate: https://runsignup.com/Race/CT/Hamden/DeniseDAscenzoWalk