Jumpin' for Jazz

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Jumpin' for Jazz A non-profit organization to fund research for a cure to Friedreich's Ataxia. Most Friedreich's ataxia victims do not live past their 35th birthday.

Friedreich’s ataxia (FRDA) is a genetic, progressive, neurodegenerative movement disorder, with a typical age of onset between 10 and 15 years. Even with intensive care, Friedreich's ataxia becomes a deadly disorder that destroys nerves, impairs motor skills (including the ability to walk), leads to heart complications, and loss of speech.

Recruitment for an observational study.
07/25/2026

Recruitment for an observational study.

The Neurobooth research team at Massachusetts General Hospital Neurology Clinic is recruiting participants for an observational study. This study aims to create technologies that can detect early FA symptoms and support the development of potential treatments.

Individuals with FA between 8-30 years old who are able to walk with or without an assistive device are eligible for the study. The study team is also recruiting healthy controls. (Individuals who have previously participated in a Neurobooth study may still be eligible to enroll.)

Participation in the study involves four visits to Boston, Massachusetts over the course of 2 years. During study visits participants will perform several neurological tasks while wearing digital sensors. Participants will be compensated with a $100 gift card for each visit and will receive up to $800 of travel reimbursement per visit.

Learn more about the study at https://ow.ly/BJJ550WNAgC.

Anyone considering participating in a clinical trial should discuss the matter with their physician. FARA does not endorse or recommend any particular studies.

Update on Biogen and Synapticure.
07/25/2026

Update on Biogen and Synapticure.

In a community statement shared earlier this month, Biogen provided an update on their partnership with Synapticure, which offers virtual neurology care and support services for adults living with Friedreich's ataxia (FA) and other ataxias across the United States.

Read the full statement at https://ow.ly/Ab8x50Zp5jP

New grant to study Frataxin.
03/02/2026

New grant to study Frataxin.

The FARA Grant Program is proud to award a Postdoctoral Research Award to Agostina Di Pizio, PhD, at CNR Institute of Neuroscience (IN-CNR) to study how frataxin loss affects sensory neurons and explore potential therapeutic strategies for FA.

Learn more about this grant and other FARA-funded research at https://ow.ly/sQ2p50YhGUh

Let us know how you showed your stripes!
03/02/2026

Let us know how you showed your stripes!

Today is !

Rare diseases impact 1 in 10 Americans. Everyone can play a role in helping to expand access to care and supporting research for people living with rare diseases.

Visit https://ow.ly/SIzW50Yl5qy to learn more and !

Recruitment for UNIFIED Natural History Study.
12/26/2025

Recruitment for UNIFIED Natural History Study.

The Friedreich Ataxia Global Clinical Consortium UNIFIED Natural History Study (UNIFAI) is currently recruiting individuals of all ages and stages of Friedreich's ataxia (FA) at multiple global sites. The study will assess and evaluate clinical outcomes such as disease progression, symptom severity, and overall quality of life using data from medical history, health questionnaires, neurological and functional assessments, cardiac examinations, and laboratory studies.

For more information visit https://ow.ly/Y5Wq50WAVV7

Anyone considering participating in a clinical trial or study should discuss the matter with their physician. FARA does not endorse or recommend any particular studies.

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5847 N Oakland Avenue
Indianapolis, IN
46220

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+13174262466

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