March Newsletter

Rare Disease Week on Capital Hill

During the last week of February, the Every Life Foundation for Rare Diseases held a conference in Washington, DC. The Rare Disease Week on Capitol Hill Conference included a Lobby Day with Senators and Members of Congress. Avery’s Hope was represented by Caryl Harris, Founder & Executive Director. The goal was to encourage our representatives in Pennsylvania to support the Open Act. The bill provides incentives for companies to repurpose or “rarepurpose” existing treatments for rare disease indications. The 21st Century Cures Act, which would provide billions in precision medicine funding, was also on the agenda.

Thank You, Pierre’s

Thank you Pierre’s of New Hope for your generous donation from your Valentine’s Day fundraiser benefiting Avery’s Hope!

Upcoming Events Panera Bread Fundraising Night on March 28th. Save the Date!

Flemington, NJ location from 4:00pm – 8:00pm

#CaringForRare Bicycling Event Weekend

September 15 and 16, 2018

For the third year in a row, Avery’s Hope will bring an amazing cycling event to Hunterdon and Bucks Counties. There will be a century, metric, half metric and a family friendly 15 mile towpath ride. This year we are taking a step back to our roots and remembering why we choose to ride. Our two longer distances will head out and back from Hunterdon County NJ and head through beautiful Lambertville and then out towards two of the well known Children’s Hospital of Philadelphia’s satellite facilities. Please consider riding, volunteering, sponsoring or donating. Register here.