Hope in Focus Joins the Denise D’Ascenzo Walk to Fight Rare Diseases

Hope in Focus, a nonprofit 501(c)3 rare disease advocacy organization based in Ledyard, Connecticut, is partnering for the first time with the Denise D'Ascenzo Foundation Walk to Fight Rare Diseases taking place on Saturday, April 27 at 10:00am at Quinnipiac University in Hamden, Connecticut. To contribute to, or walk with Hope in Focus, visit https://runsignup.com/hopeinfocus. 

The 2-mile walk kicks off at 10:00 a.m. The registration fee to join the walk is $30. Participants can register the day of the event, or in advance online. Participants may also join to walk virtually and JB Sports will mail a shirt and bib to them. 

As a participant in this event, Hope in Focus will receive 50 percent of the registration fees and 85 percent of all additional 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, it is challenging to reach our community, supporters, and to 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 Director of Outreach and Development 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, 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/hopeinfocus

About Hope In Focus 

Sofia Sees Hope was founded in 2014 by Laura Manfre and Charles Priebe, whose daughter Sofia has Leber congenital amaurosis (LCA). This rare genetic retinal condition is characterized by severe vision loss at birth and leads to total blindness. In 2021, the organization rebranded as Hope in Focus to better reflect its global work for the LCA and IRD communities.

The mission of Hope in Focus is to transform the lives of those affected by blindness caused by rare inherited eye disease. The nonprofit organization generates awareness, raises funds for research, and provides outreach, support and education to those affected by LCA and other rare retinal diseases.