Fall Update
Jojo and Chloe to Run the NYC Marathon
For the 6th year, Jojo and Chloe will be running in the NYC Marathon to support the Foundation's work in spreading awareness of APBD and advancing research!

Join us in supporting Jojo and Chloe to provide hope and help to people suffering from APBD. We have 100% board participation for this year's challenge and are more than halfway to our goal of $60,000! 

Thank you to those that have donated.

Donate today to help us achieve our goal.
Learning from Other Rare Disease Organizations
This month, the Foundation sent representatives to two different conferences -- BioNJ's Patient Advocacy Summit and NORD's (National Organization for Rare Disorders) Rare Diseases and Orphan Products Breakthrough Summit.

The Bio NJ meeting had informative sessions including one titled, Empowering the Patient's Voice to Become an Influencer, which discussed how to use the media to help increase advocacy. The Foundation plans to continue to amplify our patients' voice to ensure broader awareness of APBD and its symptoms.

The NORD meeting went into detail about progress made in pharmaceuticals and shared that four FDA grants were received by NORD in September. These additional funds will assist the APBD Research Foundation and others in the rare disease community gain faster access to needed medications.

Attending these conferences allows the APBD Research Foundation to stay current on trends in the rare disease space. The knowledge gained will help propel our plans for advocacy and research.
Planning for the Future
The APBD Research Foundation has began an intensive Strategic Planning initiative to ensure the organization remains true to its mission. This 6-month process includes interviewing different stakeholders. The first meeting was held in September with 12 people in attendance, including many board members and volunteers. The next session will take place at the end of the year to review the next steps and the new Strategic Plan will be ready in the first half of 2020. We'd like to thank Kristina Lademarco-Sudell and Bruce Friedman, two consultants, for offering their services probono.
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Connect with us
APBD Research Foundation | info@apbdrf.org |  www.apbdrf.org | Phone: 646.580.5610