Friedreich's Ataxia Insights

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A recent study aimed to evaluate how the disease burden of Friedreich's ataxia changes over time and identify factors associated with its progression. This study used a remote approach, allowing for continuous monitoring without in-person visits, which could provide insights into real-world disease progression.

The study's focus on remote monitoring could help in understanding factors influencing disease progression, crucial for developing more effective management strategies. By analyzing changes in disease burden, researchers can tailor treatments to individual needs, improving quality of life for those affected. This research contributes to ongoing efforts to manage and potentially slow the progression of Friedreich's ataxia, as reported by Monickaraj et al. (2025).

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Community News

National Ataxia FoundationNational Ataxia FoundationApr 08, 2025

We are excited to share that in 2025, NAF is providing a total of $730,000 toward Ataxia Research as part of our grant program. These funds will be going to 18 different research studies! Thank you to our scientific reviewers who volunteer their time and expertise to make sure that the best science to accelerate Ataxia treatment development is funded!

You can learn more about 2025 Funded Research here: https://www.ataxia.org/2025-naf-research-grants/

National Ataxia Foundation Post
Ataxie Ataxia CanadaAtaxie Ataxia CanadaApr 11, 2025

☕ Café Causerie et Remise de la Bourse M/2 avec Sinem Kara 🌟

Nous sommes ravis de vous inviter à un café-causerie "spécial et extraordinaire" lors de la journée officielle de la remise médiatique de la bourse M/2, en collaboration avec l'émission Big Brother Célébrité et notre nouvelle amie et grande gagnante Madame Sinem Kara!

Cet événement marquera un moment important. Profitons de cette vitrine médiatique pour enfin nous afficher en tant que la communauté dynamique et engagée que nous sommes devenue.

Ce sera l'occasion idéale de fraterniser, discuter et même de poser vos questions directement à notre directeur général François-Olivier Théberge qui sera lui aussi sur place. Nous pourrions discuter du tournoi de Pickleball, du projet de Voile Adaptée, du Défi Ataxie 2025, de Skyclarys et plus encore.

📅 Date : À confirmer

📍 Lieu : Quartier Dix30

Nous serions heureux de vous compter parmi nous pour célébrer ce moment et faire rayonner notre engagement collectif ! 🌟

Qui sera de la partie ?

🙌 Joignez-vous à nous pour un échange convivial et inspirant, rempli de gratitude.

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☕ Coffee Chat – M/2 Award Day with Sinem Kara 🌟

We are excited to invite you to a "special and extraordinary" coffee chat during the official media event for the M/2 award, in collaboration with the show Big Brother Célébrité and our new friend and big winner, Ms. Sinem Kara!

This event will mark an important moment. Let’s take advantage of this media spotlight to finally showcase ourselves as the dynamic and engaged community we’ve become.

It will be the perfect opportunity to socialize, chat, and even ask your questions directly to our General Director, François-Olivier Théberge, who will also be on-site.

📅 Date: To be confirmed

📍 Location: Quartier Dix30

We would be thrilled to have you join us in celebrating this moment and shining a light on our collective commitment! 🌟

Who’s joining us?

🙌 Come share a friendly and inspiring exchange, filled with gratitude.

Ataxie Ataxia Canada Post
Cure FACure FAApr 08, 2025

The Senate HELP committee is meeting tomorrow morning and the Give Kids a Chance Act of 2025 is on the agenda. The Give Kids a Chance Act would reauthorize the Rare Pediatric Disease Priority Review Voucher (PRV) program, which offers a crucial incentive for companies to develop therapies for rare disease conditions that impact children.

Send a message to your Senators TODAY asking them to support the Give Kids a Chance Act of 2025 using the National Organization for Rare Disorders, Inc. (NORD)'s TAKE ACTION page: https://rarediseases.org/driving-policy/take-action/#/260

Cure FA Post

Upcoming Events

APR
28
SCA28 & SPAX5 Webinar Online National Ataxia Foundation
MAY
08
Patient insights panel discussion In Person Ataxia and Me
MAY
11
Hampton Court Palace 10K Run In Person Ataxia UK • London, United Kingdom
MAY
17
Coastal Ultra Marathon In Person Ataxia UK • London, United Kingdom
MAY
18
Charity 10K Run In Person Ataxia UK • London, United Kingdom