Lighting the Way to a Cure

Western PA Drum & Roll

Andrew Carnegie Free Library and Music Hall 300 Beechwood Avenue, Carnegie, PA

Please mark your calendars: The 2021 Western PA Drum & Roll to Cure FSHD has been scheduled! We hope to see you on Saturday, November 6th, 2021! Event information can be found here: https://p2p.onecause.com/drumandroll Please reach out to the Chapter Director, Mark Christman, with any questions! He can be reached at WesternPAChapter@fshdsociety.org We look forward... Read More »

Magic for a Cure

Kolo Klub Hoboken, NJ

Please join us for "Magic for a Cure" for FSH Muscular Dystrophy on Thursday, November 18th at the Kolo Klub in Hoboken NJ! Celebrity Magician, John Stessel, will MC an amazing evening of fun and magic, all while raising awareness and critical funds for FSHD! For all event information, please click HERE Questions? Contact Beth... Read More »

Ontario Virtual Chapter Meeting

Ontario Ontario, Ontario

Saturday, November 20, 2021 11:00am-12:30am ET Please join fellow patient Emily Caouette for an extended-length session as she shares her FSH journey. Learn how she's improved her pain from years of level 8-10 down to 1-3 over the span of just four months. She’ll discuss FSH-focused studies, beneficial vitamins and supplements, low inflammation diet, helpful resources, and disease... Read More »

Recurring

Virginia Monthly Meeting

Zoom Virtual Meeting

Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! For the last meeting of the year, we will be celebrating how far we have come in 2021, and looking... Read More »

Women on Wellness – Menopause

First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month's Women on Wellness meeting will discuss menopause in women with FSHD. How has menopause affected your body and muscle functions? What are some tips and tricks for coping? This is our mutual support... Read More »

Columbus Chapter Meeting

Discovery Auditorium, Nationwide Children's Hospital 700 Childrens Dr, Columbus

Saturday, Dec. 11th, 2021 1pm – 2:30pm ET Discovery Auditorium, Nationwide Children’s Hospital 700 Children’s Drive Columbus, OH 43205 Please join us for an exciting Columbus Chapter Meeting, held at the Discovery Auditorium at Nationwide Children’s Hospital! Dr. Scott Harper will be our primary speaker, updating our group on what’s going on in the field... Read More »

Bay Area Virtual Chapter Meeting

Bay Area Virtual San Francisco, CA

Sunday, December 12, 2021 1:00pm - 2:00pm PT Please join us as Dr. Bill Lewis provided information about participating in the research study he is heading up at UC Davis. Hope to "see" you there. Kent and Sue Drescher, Bay Area Chapter Directors

Early Onset Parent Roundtable

Virtual Denver

Tuesday, December 14, 2021 8:00pm Eastern/5:00pm Pacific Please join us for the December Early-Onset Parent Roundtable, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as possible. This month Ally will provide information to parents about the MOVE study and participating sites, and pass... Read More »

GenZ of FSHD

4:00 PM ET | 3:00 PM CT | 2:00 PM MT | 1:00 PM PT This is the virtual meeting of the GenZ of FSHD group, for people with FSHD who were born after the mid-1990s (with some wiggle room). It is open to people from everywhere who are in this age group. Our purpose... Read More »

Virginia Monthly Meeting

Zoom Virtual Meeting

Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! For the last meeting of the year, we will be celebrating how far we have come in 2021, and looking... Read More »

Pacific Northwest Virtual Chapter Meeting

Seattle, Washington Seattle, WA

Saturday, January 15, 2022 10:00am-11:30am PT   Please join us for coffee hour for a casual meet up to plan future meetings and to check in with other chapter members! Hope to "see" you there! ~Selina Lai, Pacific Northwest Chapter Director

Recurring

Virginia Chapter virtual monthly meeting

Zoom Virtual Meeting

Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join... Read More »

Southwest Florida In-Person Chapter Meeting

Southwest Florida Naples, FL

SW Florida In-person Chapter Meeting Sunday, February 06, 2022 3:30pm ET Happy 2022! It’s been such a long time since we’ve been able to gather as a chapter. Let’s change that! You are invited to join us for a chance to reconnect with each other and celebrate all we have to look forward to this... Read More »

New England Virtual Chapter Meeting

New England Boston, MA

Wednesday, February 9, 2022 7:00pm-8:00pm EST Please join us for the first New England chapter meeting of 2022! We look forward to “seeing” everyone again soon. This meeting will be held virtually, so that as many of our group as possible can attend from the warmth & safety of their homes. Let’s start the new... Read More »

Recurring

Virginia Chapter virtual monthly meeting

Zoom Virtual Meeting

Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join... Read More »

North Carolina Virtual Chapter Meeting

North Carolina NC

Saturday, Feb. 26th 4pm ET | 3pm CT | 2pm MT | 1pm PT   Please join us for the next virtual gathering of the North Carolina Chapter, this Saturday, February 26th, 4pm ET! This will be an informal meeting, and everyone is welcome to share updates, ask questions, and bring your ideas. We love... Read More »

Pacific Northwest Chapter Meeting

Home of Selina, Russel and Stuart Lai 2210 7th St. NW, Gig Harbor, WA

Pacific Northwest Chapter Hybrid Meeting Saturday, March 5, 2022 12:00pm - 2:00pm Pacific Time 2210 7th St NW, Gig Harbor, WA Home of Selina, Russell & Stuart Lai Path to Personal Wellness - Tips from the Locals Please join us for our next Chapter meeting where we will hear tips from our local members! Guests... Read More »

Western PA Virtual Chapter Meeting

Western PA Virtual Pittsburgh, PA

Western PA Chapter Virtual Meeting Thursday, March 10, 2022 6:00 p.m. Eastern Time|5:00 Central Time|4:00 Mountain Time|3:00 Pacific Time Please join us for the first Western PA Chapter meeting of 2022! Jump on board via Zoom for a chance to reconnect with each other, explore the resources the FSHD Society makes available to support and... Read More »

All California Chapter Virtual Meeting

Virtual Denver

All California Chapters Meeting March 13, 2022 2:00PM PT|3:00PM MT|4:00PM CT|5:00PM ETAs the world opens and spring arrives we all need to re-energize. We invite you to register for a Zoom San Diego, Bay Area and Los Angeles Chapter meeting with Kent Drescher. Kent is an FSHD patient and a graduate of the Fuller Graduate... Read More »

Recurring

Virginia Chapter virtual monthly meeting

Zoom Virtual Meeting

Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join... Read More »

East TN Virtual Chapter Meeting

Virtual Denver

Saturday, March 26th 4:00pm ET|3:00pm CT|2:00pm MT|1:00pm PT You are invited to join us for a virtual meeting of the East TN Chapter! We are looking forward to reconnecting with friends old & new. At our first meeting of 2022, we will share some exciting updates from the Society, and discuss how we’d like to... Read More »

CenTex Virtual Chapter Meeting

Virtual Denver

CenTex Virtual Chapter Meeting Sunday, March 27, 2022 2:00PM Central Time Please join us as we welcome our guest speaker, Jodie Howell. She will discuss with us how to become clinical trial ready. There will be time for introductions and questions, so make sure to bring your questions to the meeting! We hope to “see”... Read More »

Columbus Chapter Meeting

Columbus Metropolitan Library-Dublin Branch 75 N High St, Dublin, OH

Saturday, April 2, 2022 10:00am ET Columbus Metropolitan Library - Dublin Branch (Meeting Room 1) 75 North Hight St. Dublin, OH 43017 Parking is located just behind the library Please join us for the next meeting of the Columbus Chapter! At this gathering, we are planning to discuss: Planning for 2022, the expectations of the... Read More »

Chicago Virtual Chapter Meeting

Chicago IL

Saturday, April 2nd, 11am CT Chicagoland Virtual Chapter Meeting Please join us virtually for the next meeting of the Chicagoland Chapter! We will have some new faces joining us this time around, and we hope to see many of you there as well. We will be discussing all the exciting news that has been coming... Read More »

Idaho Talent Fest 2022!

Nampa Civic Center 311 3rd St S, Nampa, ID

Idaho Talent Fest 2022 - Saturday, April 9th The FSHD Society, Idaho Chapter,  will be hosting the second annual Idaho Talent Fest to Cure FSH Muscular Dystrophy (FSHD). This competition will spotlight and celebrate many talented individuals, while raising funds and awareness for those suffering from FSH Muscular Dystrophy.  Finalists will perform in front of... Read More »

New England Virtual Chapter Meeting

New England Virtual boston

New England Virtual Chapter Meeting Wednesday, April 13th 7pm ET | 6pm CT | 5pm MT | 4pm PT Please join us for the next virtual meeting of the New England Chapter! We welcome friends old and new, from Maine, New Hampshire, Vermont, Massachusetts, Rhode Island, Connecticut…. And beyond!! For our April meeting, we will... Read More »

Ontario Virtual Chapter Meeting

Virtual Denver

Saturday, April 23 2022 11:00am ET | 10:00am CT | 9:00am MT | 8:00am PT Please join us as we watch the webinar recording featuring Eva Chin, the Executive Director for Solve FSHD - a recently formed Canadian company that is focused on accelerating the development of treatments for FSHD. We will follow the viewing... Read More »

Dakotas Chapter Meeting

Fargo 3247 47th Street S, Fargo, ND

April 23, 2022 11:00am Central Time 3247 47th Street S Fargo, ND 58104 Please join us for our first in-person gathering of the year! It’s been such a long time since we’ve been able to gather as a chapter.   Join us for a chance to reconnect with each other, talk about our goals for the... Read More »

Minnesota Chapter Meeting

Ridgedale Library 12601 Ridgedale Dr., Minnetonka, MN

Minnesota In-Person Chapter Meeting Sunday, April 24, 2022 12:00PM Central Time Please join us for our first in-person event since the chapter launch! In this meeting we will discuss where we've been, where we're at, and where we're going (2025). We can't wait to see you there! Jacob Wise, Minnesota Chapter Director

Recurring

Virginia Chapter virtual monthly meeting

Zoom Virtual Meeting

Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join... Read More »

Pacific Northwest Chapter Meeting

Virtual Denver

Pacific Northwest Chapter Meeting Sunday, May 1, 2022 12:00PM PT Please join us for a virtual meeting for a discussion of nutrition supplementation from a holistic nutrition approach. Our speaker will be a family friend from Vancouver, Jonelle Young, who has been a personal trainer and nutrition coach since 2006. She completed her training in... Read More »

North Texas Chapter Kick Off Meeting

Farmers Branch Rec Center 14050 Heartside Place, Farmers Branch, TX

North Texas Chapter Kick Off Meeting! Saturday, May 7th, 2022 1:00pm-3:00pm Central Time Farmers Branch Rec Center The Oak Room 14050 Heartside Place Farmers Branch, TX Please join us for our FSHD Society North Texas Chapter Kickoff! It’s been a few years since the North Texas has had an active chapter, and I’m looking forward... Read More »

New England Chapter Meeting

Connecticut Virtual Meeting https://zoom.us/j/442453571, Or Telephone: 669-900-6833, Meeting ID: 442 453 571, CT

Wednesday, May 11th, 2022 7pm ET | 6pm CT | 5pm MT | 4pm PT We hope you can join us for the next virtual meeting of the New England Chapter! For our May meeting, we will be joined by Dr. Lawrence Hayward, MD PhD from UMass Memorial Medical Center. He will be providing the... Read More »

All California Chapter Meeting

Virtual TX

All California Chapters Meeting Resiliency in Living with FSHD Sunday, May 15th, 2022 2:00pm Pacific Time Please join us for Part 2 of Resiliency in Living with FSHD. Our guest speakers, Dr. Kent Drescher and Dr. Robyn Walser, will discuss, role play, and answer questions about Acceptance and Commitment Therapy (ACT) as a practiced technique to... Read More »

Mid-Atlantic Trivia Night

Mid-Atlantic DC

Trivia Night, hosted by the Mid-Atlantic Chapter Sunday, May 15th 2022 7pm ET | 6pm CT | 5pm MT | 4pm PT Via Zoom (link to be provided to registered attendees) The Mid-Atlantic Chapter invites you to join their Virtual Trivia Night! The evening will be hosted by Walsh Trivia, who have been featured on... Read More »

Recurring

Virginia Chapter virtual monthly meeting

Zoom Virtual Meeting

Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join... Read More »

St. Louis Connection Event

BC's Kitchen in the Meadows of Lake St. Louis 11 Meadow Circle Drive, Lake St. Louis, MO

St. Louis In-Person Chapter Meeting Saturday, June 4th, 2022 11:30am Central Time BC's Kitchen in the Meadows of Lake Saint Lewis 11 Meadow Circle Drive, Lake St. Louis, MO 63367 Let’s Reconnect! Please join the FSHD Society St. Louis Chapter for lunch on Saturday, June 4th, at 11:30am at BC’s Kitchen in the Meadows of... Read More »

Ontario Chapter Lab Tour and Meeting

Children's Hospital of Eastern Ontario Ottawa, Ontario

Lab Tour & Meeting Saturday June 11th, 2022 12:30pm - 3:00pm ET Children's Hospital of Eastern Ontario (CHEO) Ottawa, ON The Ontario Chapter of the FSHD Society invites you to a very special “field trip” event! We are very lucky to be invited to tour the lab of Dr. Hanns Lochmuller at the Children’s Hospital... Read More »

29th Annual International Research Congress

Waldorf Astoria and Hilton Bonnet Creek 14200 Bonnet Creek Resort Lane, Orlando, FL

The FSHD Society’s annual FSHD International Research Congress is the premier global scientific conference exclusively focused on facioscapulohumeral muscular dystrophy (FSHD) research. The IRC is open to all active researchers working in FSHD and related fields. World renowned clinicians, medical researchers, pharmaceutical industry leaders and basic scientists present and discuss new developments, reinforce collaborative efforts,... Read More »

2022 FSHD Connect

Orlando, FL orlando, FL

FSHD Connect is the FSHD Society's flagship educational conference. Held every two years, it 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 two days of immersive learning and workshops. You'll find out about the latest research, drug development, and... Read More »

Pacific Northwest Connect Watch Party

Boeing Museum of Flight 9094 E. Marginal Way S, Seattle, WA

FSHD Society Connect Watch Party Saturday, June 18th, 2022 9:00am - 3:00pm Pacific Time Boeing Museum of Flight 9094 E. Marginal Way S Seattle, WA South View Lounge Join us for the afternoon sessions of the FSHD Connect Conference, which will be live-streamed from 10:00am to 2:00pm Pacific Time. Lunch will be provided. All attendees... Read More »

Colorado Chapter “Watch Party”

Southglenn Library 6972 S. Vine St., Centennial, CO, CO

Colorado Chapter "Watch Party" Saturday, June 18th, 2022 10am - 2pm MT Southglenn Library - Meeting Rooms A&B 6972 S Vine St, Centennial, CO 80122 As you may have heard, the FSHD Society is bringing FSHD Stakeholders from around the world together for 6 days in June to chart a strategy to bring effective treatments... Read More »

World FSHD Day

Every June 20th, people around the world join in activities to raise awareness for Facioscapulohumeral muscular dystrophy (FSHD) through World FSHD Day. Visit our World FSHD Day page for ideas of how you can get involved by posting images and stories on your favorite social media channels. This year you can also purchase a World FSHD... Read More »

North Carolina Virtual Chapter Meeting

Virtual Denver

Sunday, June 26th 2pm ET Please join us for the next virtual gathering of the North Carolina Chapter! This will be an informal meeting, and everyone is welcome to share updates, ask questions, and bring your ideas. We will discuss the recent Patient Connect conference, takeaways, and lessons learned. We will also discuss the new... Read More »

Recurring

Virginia Chapter virtual monthly meeting

Zoom Virtual Meeting

Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join... Read More »

Western PA Virtual Chapter Meeting

Virtual Denver

Wednesday, June 29th 6pm ET We hope you will join us for the next meeting of the Western PA Chapter! We will discuss takeaways from the recent Patient Connect conference, the status of research and clinical trials, and what we have to look forward to for the rest of the year. It is sure to... Read More »