Friedreich's Ataxia Insights

New Report Release: A Guide to Nutrition for Patients with Friedreich's Ataxia

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Exclusive Report

New Report Release: A Guide to Nutrition for Patients with Friedreich's Ataxia

We’re excited to share our latest in-depth report developed in collaboration with AllMyHealth. This guide provides practical insights on how nutrition plays a vital role in managing Friedreich's ataxia.

Key highlights: understanding Friedreich's ataxia and its impact on nutrition, general dietary guidelines for people with Friedreich's ataxia, specific nutritional needs for Friedreich's ataxia patients, practical advice and meal planning tips (including sample meal plans and recipes).

Available in both text and audio formats - dive in today and share with your community!

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The report is available for free online on the AllMyHealth website.

www.allmyhealth.io/reports

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Latest Research

In a study by Rowe (2025), researchers investigated brainstem atrophy in patients with Late-Onset GM2-Gangliosidoses (LOGG), which includes late-onset Tay-Sachs (LOTS) and Sandhoff disease (LOSD). Using MRI brain imaging and automatic segmentation, they compared the brainstem substructures of 10 LOGG patients to 7 age-matched controls. They found significant atrophy in the pons and superior cerebellar peduncle (SCP) in LOGG patients compared to controls. Specifically, the pons and SCP volumes were notably smaller in the LOTS subgroup. However, the small size of the LOSD group prevented independent analysis.

Interestingly, there was no clear association between the volume of these brainstem areas and the severity of clinical ataxia or the duration of the disease. The study also referenced previous research by Rowe et al. (2021), which found that cerebellar volume was relatively preserved in LOSD compared to LOTS, where cerebellar atrophy was more pronounced. These findings underscore the importance of distinguishing between LOGG subtypes for a better understanding of the disease's anatomical and clinical manifestations.

Community News

National Ataxia FoundationNational Ataxia FoundationFeb 12, 2025

Losing the ability to clearly communicate can be a challenging symptom of Ataxia. And as swallowing becomes more difficult, choking becomes a greater risk. Check out Dr. Hilger's presentation from last year's AAC as she shares strategies, technologies, & exercises to help you improve your speech & swallowing.

You can watch the full session here: https://youtu.be/Oy5KqGcjb_g

Are you interested in joining us at #2025AAC to attend valuable sessions like this one? Learn more at www.Ataxia.org/2025AAC

Cure FACure FAFeb 14, 2025

The FARA Grant Program is proud to award a Graduate Research Fellowship to David Berryman at the University of Florida to test ways to prevent the GAA repeat expansion in the frataxin gene that causes Friedreich's ataxia (FA).

Learn more about this grant and other FARA-funded research at https://ow.ly/hcZA50V0A28.

Cure FA Post
Ataxia UKAtaxia UKFeb 15, 2025

�A Heartfelt Thank You! �

We are incredibly grateful to Susan & Ellie Thompson for their generous £330 donation raised through their Christmas raffle! �

Your kindness and dedication to supporting Ataxia UK during the festive season is truly inspiring. What a wonderful way to spread the joy! �

Thank you for thinking of others and for being part of our community. Wishing you all the best for the year ahead!

Upcoming Events

FEB
24
Rare Disease Day Advocacy Cure FA • Downingtown, PA    Online
FEB
26
SCA3 Biomarker Study Presentation National Ataxia Foundation    Online
FEB
28
Rare Disease Day support Ataxia and Me    In Person

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