The ADLD Center, dedicated to supporting those impacted by autosomal dominant adult-onset demyelinating leukodystrophy (ADLD), recently received 501(c)(3) approval from the IRS. This designation means the organization is now an official nonprofit charity.
Donors can now make tax-deductible contributions to the ADLD Center through their pledge page on Dasvandh Network. So far, the organization has raised over $125,000, thanks in large part to a generous $250,000 matching donation from a Board Member. However, this matching opportunity is set to expire soon, so the Center encourages anyone interested in contributing to this important cause to donate now.
Funds raised will primarily support establishing an ADLD Clinical Care Network and funding genetic and clinical research efforts to find potential treatments. At a fall 2021 webinar for the ADLD community, the Center highlighted promising partnerships and recent gene therapy breakthroughs indicating that significant progress could be on the horizon.
ADLD Center Hosts Informative Fall Webinar for Community
This past October, the ADLD Center held an online webinar event for members of the ADLD community. The webinar provided an opportunity for patients, families, caregivers and other supporters to come together virtually and learn more about the organization’s efforts.
The Center reports that the webinar was a success and thanks all who were able to attend. For those interested community members who missed out, ADLD Center has made the full webinar recording available on our website. You can also watch the recording below.
In 2022, the ADLD Center aims to expand their advocacy community and build a secure patient registry database to advance research. They invite any patients, families, caregivers or other supporters impacted by ADLD to join their mailing list and get involved in these initiatives. By growing their base of advocates and boosting the visibility of those affected by this rare disease, the Center hopes to push for greater urgency and progress in therapeutic research and drug development.
The ADLD Center emphasizes their mission is to serve the ADLD community. Anyone with questions or suggestions can reach out to them directly via email. The organization promises to keep all communications strictly confidential.