Welcome to FSH Society’s Inaugural Chapter: New England!
The New England Chapter was officially launched on June 20th, 2018. Our goal as a Chapter is to engage and empower our community all across the region to support each other and to fight to find a cure.Please join our Chapter Call being held January 8th at 6:30pm
1.) We are hoping to host our 1st Walk n’ Roll fundraiser event in 2019 and WE NEED YOUR HELP! Every role—big or small—helps tremendously!
2.) We will discuss the process for planning and Walk n’ Roll event at our January 8 viritual meeting and we’d love to have as many people as possible to get on the call and share your ideas and let us know how you can get involved! Look out for an agenda coming your way by January 7.
3.) Join the call! We’ll be holding a virtual meeting on Tuesday, January 8, 2019, 6:30-7:30 PM:
Join from Computer: https://zoom.us/j/8746919235
Or Telephone: +1 646 558 8656 Meeting ID: 874 691 9235
To reach us directly, please email: NewEnglandChapter@fshsociety.org.CALL TO ACTION: The University of Rochester needs additional patient participants for their research! Click here for a full explanation from Leann Lewis, Health Project Coordinator at the Neurology-Neuromuscular Disease Center
At the University of Rochester Medical Center, we have multiple FSHD studies going on all the time. We work with many other sites around the country and the world, so if potential subjects contact us, we can always refer them to a site that is closer or more convenient.
We have studies that are one-day only, or require multiple visits. Some of these studies involve invasive procedures like muscle biopsy, some involve study drugs, and others do not involve any invasive procedures. When potential subjects contact me, I can talk to them about the different studies we have going on and help them determine which study that person is best suited for based on eligibility, time commitment, preference, etc.
Another terrific resource is the FSHD Registry we have at the URMC. People can go to dystrophyregistry.org and sign up to join the Registry. Subjects will complete annual surveys to update their information regarding their condition and contact information so that their eligibility for studies can be prescreened. Then the Registry will send the subject information on the studies they are eligible for. The subject can then decide if they would like to contact the researchers of those studies to participate. Subject information is never released to other researchers.
Subjects can contact me at 585-275-7680.”
Leann Lewis, MS
Health Project Coordinator
Neurology-Neuromuscular Disease Center
University of Rochester
601 Elmwood Avenue
Rochester, NY 14642
Video and Presentation slides now available from the November Wellstone Meeting!
Those of you who attended the November 4 meeting at the Wellstone Center are very aware of how great the content was, so I am thrilled to share the following link with you. If you did not attend or need a refresher on the exciting possible solutions for FSHD, please see the meeting content here: https://www.fshsociety.org/2018/12/new-england-chapter-meeting-talks/
Click here for the latest news & updates from the FSH Society - December 2018
FSH Society News:
- CEO webinar – Mark Stone explains our strategy to accelerate therapy development and why the next three years are so critical. Worth sharing and discussing at your next chapter meeting!
- The FSH Society is convening an Industry Collaborative Workshop on March 12, 2019, bringing together companies that have FSHD drug development programs with academic thought leaders and FDA representatives. This is a key part of our FSHD Therapeutics Accelerator project. If you would like to learn more, please contact June Kinoshita.
- Fulcrum Therapeutics is actively recruiting patients to participate in important studies in preparation for their clinical trial. The studies are being conducted in Rochester, NY, Baltimore, MD, Kansas City, Seattle, WA, and Irvine, CA. For more information, please contact June Kinoshita.
- DUX4 structure unveiled. An important advance made by Dr. Michael Kyba (and FSH Society grantee), that can help with the design of new drugs to block DUX4 activity.
Educating our Members:
- “Building the house” for FSHD therapies. Why it’s so important for people to volunteer for research studies, especially now.
- Our Guide for Schools. One of our classic brochures, written by a team of experts in early-onset FSHD and school accommodations, this is a must-have for every family with school-age children who have been diagnosed with FSHD..
- The flu season is upon us. Should you get the vaccine? We asked FSHD experts and here’s what they recommended.