Friedreich’s Ataxia Research Alliance Unveils New Patient Registry

Leslie “Les” Goldstein, an Arete Wealth Management-licensed advisor, has served as CEO of Personal Financial Strategies, Inc., since 1996. Applying his Arete Wealth Management, LLC licensure skills daily as a financial planner serving high net worth families, Leslie Goldstein helped raise money for two family members affected by an incurable neuromuscular disease called Friedreich’s Ataxia (FA).

The Friedreich’s Ataxia Research Alliance (FARA) was founded to support families of patients diagnosed with the incurable disease, recently announced the release of an updated FA Patient Registry. The Alliance’s first registry was built in 2005 by students from the Rochester Institute of Technology in collaboration with IT staff from Electronic Data Systems, an information technology equipment, and services company. For more than a decade, the registry helped researchers better track the prevalence of FA over geographic areas and enabled the Alliance to find patients to fill all clinical trials and clinical research studies.

The newly updated registry is designed to better integrate FA community members from across the world. The new platform features increased data security and full compliance with new privacy rules. In addition, the upgraded system offers increased research capabilities and the ability to translate foreign languages. FARA looks forward to better connecting with FA patients and conducting more research through the registry with its more robust analytic tools.
For more information about FARA, visit www.CUREFA.org.