FSHD Society Northeast Florida

09/08/2024

Thank you to everyone who came out today to the FSHD Society Northeast Florida Walk and Roll! We had a great time at the Jacksonville Zoo! We still have a few more days to reach our goal and are only $300 away thanks to an amazing anonymous donation earlier today!

https://give.fshdsociety.org/team/594800
🙏🚶‍♀️👏🦒

09/07/2024

Good morning! Today is the day for the 2024 NE Florida walk and Roll! We are still almost 8k short of our overall goal so please consider helping us out however you can. We can’t wait to see everyone at the Zoo this morning! 🙏🚶‍♀️💪

09/06/2023

Good evening! For anyone who is planning on coming to the baseball game fundraiser next weeknon 9/16, the game looks like it’s going to sell out so we need a final headcount tomorrow. If you want to attend the game with us, please register here before the end of day tomorrow 9/6

I am participating in the Walk & Roll to cure FSHD! Your donation will move us closer to treatments and a cure for FSH muscular dystrophy. The Walk & Roll builds connections, empowers community members, raises awareness, and, most importantly, funds critical research.

08/04/2023

We are getting everything ready for the Walk and Roll this September 16th at 5 pm at the Jumbo Shrimp game. Don’t forget to create your team on the website and start fundraising! We hope to see everyone at the ball game!

https://give.fshdsociety.org/event/northeast-florida-walk-and-roll/e484489

02/13/2023

Hop on this call tomorrow to learn more about their clinical trial!

Avidity Biosciences has announced its plans to launch FORTITUDE, a clinical trial in FSHD of the novel compound AOC 1020. This will be the first human trial of an FSHD disease-modifying drug based on an siRNA targeting DUX4 mRNA.

To learn more, join us tomorrow for our February FSHD University Webinar. Tuesday, February 14th, 1pm ET/10am PT. Register here: https://bit.ly/3XQ1r5u

We’ll learn more about how the drug works, the design of the trial, and where and when patients can expect to enroll in it.

10/22/2022

We had wonderful time last month at the NE Florida 2022 Walk and Roll. This year it was at the Jacksonville Jumbo Shrimp game! We raised over $16,000 for the FSHD Society Northeast Florida and we are grateful for everyone that donated and came out to support our efforts! There are several clinical trials that are starting in the next 12 months to help us battle this disease. We can see a cure on the horizon and are keeping up hope to see one before 2025. Thanks again for your support and we hope to see you again next year!!

10/22/2022

10/22/2022

08/17/2022

Did you know the FSHD Society is offering free genetic tests for FSHD? The first 100 people to sign up and qualify will get a free genetic test! Click this link to apply!

Whether you have a new diagnosis of facioscapulohumeral muscular dystrophy (FSHD) or have been living with FSHD for some time. We are ready to listen and eager to share our own knowledge