Welcome to the New England Chapter!
Thank you for visiting the New England Chapter of the FSHD Society which officially launched in June 2018. We are here to build a local community of patients, family and friends, and help them connect and advocate for themselves and each other. Our hope for the future is to find a cure – Until then, we hope to bring a greater awareness to the community, and to help improve the quality of life of all those affected.
Thanks to All Who Joined Us For the 3rd Annual Charity Bartending Event!
On Thursday, August 15th we met at McGreevy’s Sports Bar and all tips and 10% of sales were donated to the FSHD Society. We raised some funds and had a fun time supporting those with FSHD!
To reach us directly, please email: NewEnglandChapter@fshdsociety.org.
Don’t forget to follow us on FACEBOOK!
“In regards to the studies we have going on, we really need more FSHD subjects to participate, especially people who have not participated before and/or are newly diagnosed. This is not a requirement to participate, but we are trying to reach new subjects. As you know, FSHD is a rare disease, so we tend to reach the same group of people every time we recruit. And these people have been wonderful in participating multiple times over many years. Their participation is still very valuable, but we’d love to reach out to new participants as well so they can help join the effort.
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
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.fshdsociety.org/2018/12/new-england-chapter-meeting-talks/
FSHD 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 had a 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.
Upcoming Events › New England Chapter Events
New York Athletic Club Presidents Room 180 Central Park South New York, NY 10019 Advance registration required. Please click the button below. Deadline November 11, 2019. REGISTER Download the Meeting Flyer Download the 2019 NYC FSHD Family Day Agenda Join us for our first-ever New York City FSHD Family Day Conference to meet top researchers, clinicians, fellow patients, and family members. You’ll hear about ongoing clinical trials and connect with the outstanding team at Columbia University Medical Center. Speakers include Michio Hirano,…Find out more »
Jenny Hasenjaeger Levi Benson FSHD Society radio welcomes singer songwriters Levi Benson and Jenny Hasenjaeger this month. They share an FSHD diagnosis and a love of music. Levi Benson was featured earlier this year in FSHD Advocate and on our blog. Since the time he performed his first childhood song, “I Love My Lips,” made famous by VeggieTales’ Larry the Cucumber, Levi Benson’s lips have been crooning tunes. Those on the listening end of the Kansas musician's performances have been…Find out more »
This year, Acceleron’s ACE-083 drug is expected to complete its phase 2b trial, and Fulcrum is conducting its trial of Dr. Rabi Tawil the first drug intended to repress DUX4, the gene implicated in causing FSHD. This is a good time to brush up on the vocabulary of clinical trials and the FDA approval process, and learn how to navigate the path to volunteering for trials. Your guide is Rabi Tawil, MD, who is principal investigator for several clinical trials…Find out more »