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Thursday, January 26th On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society, including research updates, upcoming events, and important developments to keep you updated on all things […]
February 11, 2023 2:00pm – 4:30 pm Join us for this informative discussion about trials while sipping on a special pre-Valentine’s Day cocktail (N/A available) celebrating FSHD. Have you wondered about participating in a trial? Are you involved in a trial? Come join us to discuss the requirements and how you can prepare for […]
Thursday, February 23rd On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society, including research updates, upcoming events, and important developments to keep you updated on all things FSHD. […]
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT | 18:00 UK | 19:00 CET Dr. Rita Perlingeiro Our webinar speaker is Dr. Rita Perlingeiro, Associate Professor of Medicine within the Lillehei Heart Institute at the University of Minnesota. Her primary research interests include understanding the molecular mechanisms controlling […]
Tuesday, March 14th On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. This month, our Community Profiles guest is entrepreneur and philanthropist […]
Thursday, March 23rd On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society, including research updates, upcoming events, and important developments to keep you updated on all things FSHD. […]
1:30 PM ET | 12:30 PM CT | 11:30 AM MT | 10:30 AM PT Nizar Saad, PhD Nizar Saad, PhD is an assistant professor at the Center for Gene Therapy at Nationwide Children’s Hospital. Dr. Saad worked on FSHD for several years in the laboratory of Scott Harper, PhD, and has been involved in […]
Thursday, April 27th On the 4th Thursday of every month, look for a new episode of FSHD Radio: Hot off the Press. Each month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society, including research updates, upcoming events, and important developments to keep you updated […]
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT In October 2022, Roche/Genentech shared with us plans to initiate a new trial called MANOEUVRE. This global Phase 2 clinical study will evaluate GYM329 (RO7204239), an investigational anti-myostatin antibody targeting muscle growth, in individuals living with FSHD (NCT05548556). We have invited […]
9:00 a.m. US ET doors open | 10:00-4:00 p.m. US ET conference sessions The FSHD Society, in collaboration with the University of Rochester Medical Center, is hosting this year’s Rochester FSHD 360 conference. The University of Rochester is an epicenter for FSHD research in the U.S. in its role as the data hub for the […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT In the last few months, a raft of articles have been published on the topic of friendship. Some were about research on the topic, some were about new books that have just come out, and some were just reflections on […]
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Dr. Bakri Elshiekh We want to make sure that newcomers to the FSHD community have an opportunity to learn the basics and have their questions answered by a sympathetic expert. And those who have known of their diagnosis for a while […]
Thursday, May 25th On the 4th Thursday of every month, look for a new episode of FSHD Radio: Hot off the Press. Each month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society, including research updates, upcoming events, and important developments to keep you updated […]
Bay Area Chapter Meeting Sunday, June 11, 2023 1:00-3:00 pm PT Hoover Pavilion, Room 208 Stanford Campus Quarry Road, Palo Alto Let's meet together in-person (or Zoom) so that we can catch up with each other and hear about the latest research studies for FSHD. This event is free. Please RSVP, let us know how many will be attending, […]
SAVE THE DATE! The FSHD Society’s annual FSHD International Research Congress is the premier global conference exclusively focused on facioscapulohumeral muscular dystrophy (FSHD) research. World renowned clinicians, medical researchers, pharmaceutical industry leaders and basic scientists present and discuss new developments, reinforce collaborative efforts, facilitate new initiatives, and coordinate research and clinical activities. With the recent […]
Thursday, June 22nd On the 4th Thursday of every month, look for a new episode of FSHD Radio: Hot off the Press. Each month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society, including research updates, upcoming events, and important developments to keep you updated […]
Please join the Columbus Chapter and Nationwide Children's Hospital for an exciting day of research and community! Hear from Dr. Kevin Flanigan, Dr. Scott Harper, and Dr. Nizar Saad, then have the opportunity to actively participate in a study! In addition, hear from FSHD Society's Columbus Chapter Director Susan Aumiller, screen a short documentary, and […]
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Epic Bio, a San Francisco based therapeutics company, is developing a gene therapy medicine specifically for FSHD patients. The new product, termed EPI-321, leverages a CRISPR-based platform to precisely find and fix the specific issue in the genome that causes FSHD. […]
Thursday, July 27th The 2023 Walk & Roll to Cure FSHD is just around the corner, and Beth Johnston, the FSHD Society's Chief Community Engagement Officer, has all the details you need to know! Listen to hear about what the Walk & Roll is, how to get involved, and what’s new this year. Led entirely […]
Mountain State Chapter Meeting Tuesday, August 15, 2023 5:30 pm - 6:30 pm PT | 6:30 pm - 7:30 pm MT Join us for a special chapter meeting for all Mountain state chapters (Colorado, Idaho, Utah, and Nevada) where the FSHD Society's Chief Science Officer, Dr. Jamshid Arjomand, will provide attendees with an overview of current […]
Thursday, August 24th This month, Max Adler, a long-time friend of the FSHD Society, sits down with Tim to talk about the LA Walk & Roll. We can't wait to hear about the exciting plans for this event: Max has a supporting role in Good Bad Things, and the film's star Danny Kurtzman and director […]
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Megan McNiff Our speaker is Megan McNiff, a research associate from the John Walton Muscular Dystrophy Research Centre, Newcastle University, UK. She will be presenting the results from the FSHD European Patient Survey. The survey received over 1,000 responses from 26 […]
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Maaike Pelsma Join Maaike Pelsma, a pediatric physical therapist, to learn about shoulder dyskinesia in children with FSHD. Pelsma will describe how children with scapular weakness often use compensational strategies, especially when using the arm above shoulder level, that can be […]
Thursday, September 28th 14:00 PM CET | 13:00 PM UK | 8:00 AM ET | 7:00 AM CT | 6:00 AM MT | 5:00 AM PT Earlier this month, Fulcrum Therapeutics confirmed the completion of patient enrollment in the Phase 3 REACH clinical trial for losmapimod (read about the exciting news here), a potential groundbreaking […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT With all the floods, hurricanes, fires, and earthquakes in the news lately, we're reminded of how it's important to be prepared for emergencies. Having a disability requires extra planning. A handy reference is FEMA's Disaster Preparedness Guide for Older Adults. […]
9:00 a.m. US Pacific Time doors open | 10:00-3:00 p.m. US PT conference sessions The FSHD Society, in collaboration with Friends of FSH Research and the University of Washington Seattle, is hosting this year’s Pacific Northwest FSHD 360 conference. The University of Seattle is an international leader in FSHD research and a member of the […]
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Michaela Walker NOTE: Date has been changed from July 20 to October 19. MOVE and MOVE+ are the largest natural history studies to date of FSHD. Our webinar will be given by Michaela Walker, who is research project manager for these […]
Thursday, October 26th Today's program features the FSHD Society's Anna Gilmore, who oversees the Society's new initiative, FSHD Navigator. This program will provide superior in-person and web-based assistance to individuals who are seeking solutions to their FSHD-related challenges. These may include getting into clinical trials, finding qualified therapists and physicians, getting advice and help for […]
9:00 a.m. US Eastern Time doors open | 9:30 a.m. - 3:30 p.m. US ET conference sessions The FSHD Society, in collaboration with the Ohio State University and Nationwide Children's Hospital, is hosting this year’s Ohio FSHD 360 conference. The OSU and Nationwide are international leaders in muscular dystrophy research and clinical trials, and are […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT All of us consult "Dr. Google" when we have health questions, but how do we know if the information we find is medically sound. When our own health is involved, this is not something to take lightly! This month, we […]
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Dr. Nicholas Johnson Every year, we bring you an update on therapy development for FSHD. What strategies are being considered? How are different candidate drugs progressing through the process of reaching the clinic? What’s the latest on clinical trials? Nick Johnson, […]
Thursday, December 28th On the 4th Thursday of every month, look for a new episode of FSHD Radio: Hot off the Press. Each month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society, including research updates, upcoming events, and important developments to keep you updated […]
The Alberta Chapter invites all Canadian Chapter members to join a virtual meeting on January 9th, 2024! Guest speakers include Amanda Hill, Director of Clinical Research at the FSHD Society, Neil Camarta and Craig Kelly of the FSHD Canada Foundation, and Dr. Dillon Chen of Arrowhead Pharmaceuticals. Amanda will be giving us an update on […]
EVENT: Sacramento Chapter Meeting DATE: Thursday, January 11, 2024 TIME: 6:30 pm - 7:30 pm PT WHERE: Zoom DETAILS: Join us for our upcoming chapter meeting where we will receive an update on the status of research in the FSHD community. Dr. Bill Lewis, FSHD Society board member, Clinical Professor of Cardiovascular Medicine at UC Davis Medical Center, and Director of […]
With Nicol Voermans, MD PhD, and Nathaniël Rasing, MD 19:00 CET | 18:00 UK | 1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00am PT While FSHD patients wait for new drugs to slow the progression of muscle weakness, Dr. Voermans emphasizes that there are many interventions already that can have […]
10:15am-1:00pm ET | 9:15am-12:00pm CST | 8:15-11:00am MT | 7:15-10:00am PT Please join us for our next Greater Philadelphia FSHD Chapter meeting on Saturday, March 2 from 10:15am – 1:00pm Eastern. Our special guest speaker will be Steven S. Brooks MD MBA FACC, Senior VP of Medical Sciences and Regulatory Affairs with Vita Therapeutics, and […]
9:00 a.m. Mountain Time doors open | 10:00-3:00 p.m. MT conference sessions The FSHD Society, in collaboration with FSHD Canada Foundation and the University of Calgary, AB, Canada, is hosting the first-ever Canadian FSHD 360 conference. Dr. Lawrence Korngut and his colleagues will share the latest news on the Canadian clinical trial research network, cutting-edge […]
Finding reliable health information on the Internet, with Tina Griffin 19:00 CET | 18:00 UK | 1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00am PT Most of us turn to “Dr. Google” to find medical and health information, but how do we know the information is trustworthy? When our health […]
8:30PM ET | 7:30PM CT | 6:30PM MT | 5:30PM PT Saturday, April 13, 2024, 6:30pm MT at the Boise State University Special Events Center Raise money to fund research into cures for FSHD. Don't miss the Idaho Talent Fest, featuring a variety of performers. Enjoy a night of entertainment and vote for your favorite […]
9:00 a.m. US Central Time doors open | 10:00-3:00 p.m. US CT conference sessions Save the date!! The FSHD Society, in collaboration with the University of San Antonio Health Science Center, University of Texas Austin Medical School, and University of Texas Southwest Medical School, is hosting our first-ever Texas FSHD 360 conference. Dr. Matthew Wicklund […]
3:00-5:00pm ET | 2:00-4:00pm CT | 1:00-3:00pm MT | 12:00-2:00pm PT Sacramento Chapter Meeting Saturday, May 4, 2024 from 12:00 pm - 2:00 pm PT WHERE: Mimi's Cafe, 2029 Alta Arden Expy, Sacramento, CA 95825 DETAILS: Join us for yummy food and good conversation at Mimi's Cafe for lunch as we officially welcome our new […]
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Josie Godfrey There is great progress toward new medicines for FSHD, but even when a drug does make it to market, patients may not be able to afford it because insurers and government payers often delay or deny access because they […]
Virtual registration open until June 9th The FSHD Society’s annual FSHD International Research Congress is the premier global conference exclusively focused on facioscapulohumeral muscular dystrophy (FSHD) research. World renowned clinicians, medical researchers, pharmaceutical industry leaders and basic scientists present and discuss new developments, reinforce collaborative efforts, facilitate new initiatives, and coordinate research and clinical activities. […]
CONNECT 2024 will be hosted on June 15-16 in Denver, Colorado. CONNECT brings together world leaders in FSHD research, patient care, advocacy, education, and support. Held every two years, FSHD Connect is the world's biggest networking event for FSHD, bringing together hundreds of individuals and families living with FSH muscular dystrophy, clinicians, and researchers for […]
8:30pm ET | 7:30pm CT | 6:30pm MT | 5:30pm PT BC Chapter - World FSHD Day Celebration Event Thursday, June 20th from 5:30-8:00pm at Rogue Kitchen & Wetbar Gastown, Uber Lounge, 601 W Cordova Street, Vancouver, BC V6B 1G1 This World FSHD Day we're hosting an upscale event, thanks to our sponsor Solve FSHD. […]
Los Angeles Virtual Chapter Meeting Wednesday, August 7th | 6:00 - 7:00 pm PT Join us on Wednesday, August 7th from 6:00 pm - 7:00 pm for our upcoming virtual chapter meeting. We are excited to have our chapter come together after a brief hiatus and to share exciting updates about where we are as […]
19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT BetterLife FSHD We are thrilled to announce the premiere of BetterLife FSHD, an innovative health platform dedicated to helping you take control of your well-being and advance FSHD research. With BetterLife FSHD, you can […]
9:00 CT doors open. Conference 10:00 a.m. to 4:30 p.m. CT Lunch will be provided Our 2024 FSHD 360 in the Kansas City area is hosted by Dr. Jeffrey Statland of the University of Kansas Medical Center and FSHD CTRN. This is a historic time in FSHD, with new treatments on the horizon. Do you […]
New England Chapter Virtual Meeting Wednesday, October 23, 2024 - 7:00pm ET Please join us for our next virtual chapter meeting! We will cover: A recap of our recent Walk & Roll An overview of our FSHD 360 event taking place on November 2nd - June Kinoshita, Senior Director of Research and Education at the […]
Co-hosted by the UMass Wellstone Center for FSHD and the FSHD Society FSHD research and drug development is in a new era. Do you know what’s happening and how this might impact your life? Here’s your chance to hear from the research and advocacy leaders in New England, as well as from biopharmaceutical companies that […]
19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT ReSolve – What We Have Learned Presented by Kate Eichinger, PT, PhD, University of Rochester. ReSolve is one of the largest natural history studies of FSHD completed to date. Many of our FSHD community […]
Ontario Chapter Brunch Meeting Sunday November 24th, 2024: 11:00am - 1:00pm ET Milestones Richmond Hill (30 High Tech Rd. Richmond Hill ON L4B 4L9) Join our Ontario FSHD friends for a casual brunch meeting! We will gather to enjoy socializing with each other, discuss plans for 2025, and get research and trial updates from the […]
19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Annual Drug Development Update Presented by Nicholas Johnson, MD, Virginia Commonwealth University. This is our annual update on therapy development for FSHD. We’ll hear the latest on Fulcrum, Avidity, and Roche’s clinical trials, as […]
FSHD Europe will organize, in collaboration with the FSHD Society, the first FSHD Connect Europe meeting on June 13th – June 15th, 2025, in Amsterdam, The Netherlands. This is a networking meeting for FSHD patients and their families. It is a great opportunity to connect with other patients and families across Europe. We hope to […]
Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Parents’ Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as possible, and […]
Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Brun~Brianna Brianna Brun, MD, is a neuromuscular specialist at the University of Rochester. She is stepping into the legendary Rabi Tawil's role. She'll be talking about the MOVE Pediatric study, the importance of routine clinical appointments for children, […]
