Thank you so much for your generous contribution to the ADLD Center!
2022 has been an incredibly focused year for the Center as we work to make significant progress on our strategic priorities. We want to take a moment and share highlights of our recent momentum with you:
- Creating Awareness through a highly attended webinar with a number of scientists and patients alike (watch here)
- Forming strong clinical partnerships across the U.S. to build our clinical care network (e.g., Mayo Clinic, University of Pittsburgh, Harvard, Italian Centers)
Selecting a patient registry platform to securely bring together patient data for research and treatment development
- Establishing a committed and expert volunteer base of 8-10 individuals committed to driving our key workstreams (Strategy + Partnerships, Collaborative Research Network, Patient Engagement + Registry, Communications, Fundraising + Finance, and Grants)
- Ensuring sustainability of efforts by applying for multiple research funded by the Foundation for the NIH and other organizations - we hope to hear the results soon. We continue to look for further funding opportunities to help support our cause
A few ways in which your funds will have continued impact:
- In partnership with the Orphan Disease Center at the University of Pennsylvania, we will bring together scientists from around the globe to determine the most important research areas with respect to ADLD. Based on this Think Tank, we will issue a $100,000 grant to a fitting research team after a rigorous application process
- Creation of an ADLD Clinical Care Network that develops expertise in the care of the disease (initially 5-7 doctors across the globe)
- Patient Engagement and Registry efforts (inclusive of outreach, software license fees, consulting fees, etc.)
- Funding genetic and clinical research teams when needed
Thank you again for your continued support – we could not do this critical work without you by our side. We always appreciate hearing from our supporters – if you have any questions or ideas on ways to further our efforts, please don’t hesitate to reach out.
ADLD Center Board
