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 »

FSHD Radio: Community Profiles with Dylan King

Facebook and YouTube

Tuesday, July 12th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT 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... Read More »

San Diego Chapter Meeting

115 South Clementine Street 115 South Clementine Street, Los Angeles, CA

San Diego Chapter Meeting Saturday, July 16, 2022 11:30am-1:30pm Pacific Time 115 South Clementine Street Oceanside, CA 7th Floor Meeting Room Please join us for a potluck lunch! We will be exchanging stories and life-hacks with fellow FSHers.We will also be kicking off the discussion for our September 10, 2022, Harbor Island Event. We can't wait... Read More »

New England Chapter Summer Picnic

New England Air Museum 36 Perimeter Road, Windsor Locks, CT

New England Chapter Summer Picnic Saturday, July 16th 12pm – 4pm (in-person only) New England Air Museum 36 Perimeter Road Windsor Locks, CT 06096 We hope that the entire New England Chapter will be able to join us for our annual summer gathering! This year, we are being hosted by the New England Air Museum.... 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 FSHD Family Picnic

Adams Township Community Park 698 Valencia Rd, Mars, PA

FSHD Family Picnic Saturday, August 6th 12pm – 4pm ET Adams Township Community Park 698 Valencia Rd Mars, PA 16046   We hope you can join us for the annual summer gathering of the Western PA Chapter! We are excited for a casual, agenda-free lunch, and visiting with friends old & new. Our location has... Read More »

Bay Area Chapter Meeting

Bay Area Virtual San Francisco, CA

Bay Area Chapter Meeting Sunday, August 14, 2022 2:00pm - 3:00pm Pacific Time You're invited to a virtual gathering of our San Francisco Bay Area Chapter of the FSHD Society to discuss our upcoming Walk & Roll, as well as checking in with our members for a casual chat to see how everyone is doing.... Read More »

Florida Chapters Meeting: Tampa, Southwest Florida, and Northeast Florida

Florida Chapters: Tampa, Southwest Florida, and Northeast Florida! Wednesday, August 17th 6:30pm ET | 5:30pm CT | 4:30pm MT | 3:30pm PT   Please join us for a combined virtual meeting of all the Florida chapters! We are excited to bring together members of the Southwest, Tampa, and Northeast regions and beyond for a casual,... Read More »

San Diego Brew Quest to Cure FSHD

August 18-28, 2022 Visit all participating breweries in the San Diego area and have your name entered into a drawing for a flat screen TV. In order to receive a stamp, you must purchase at least one full-priced beer from that brewery. You may start and end at any brewery you like. Take all the... Read More »

San Diego Chapter Meeting

Virtual Denver

San Diego Chapter Meeting Thursday, August 18, 2022 5:30pm - 6:30pm Pacific Time The San Diego Walk & Roll is only a few weeks away!! Sign up now! Team Captain's Kick Off Party! Pet Costume Contest! Children's Chalk Art Activities! Fun you don't want to miss!! We're so excited about our upcoming fun fundraiser Walk &... Read More »

UPIN Family Day at the Aquarium

Loveland Living Planet Aquarium 12033 Lone Peak Pkwy, Draper, UT

The 2022 Family Day at the Aquarium! The planet is alive! Explore it with us at the 2022 UPIN Family Day at the Loveland Living Planet Aquarium on Saturday, August 20th!  Through fun and intentional programming, it is our hope here at UPIN to demonstrate our commitment to improving the overall quality of life for... 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 »

All Texas Chapter Meeting

Virtual TX

All Texas Chapter Meeting Tuesday, August 30th, 2022 6:30pm - 8:00pm Central Time The CenTex chapter invites you to join us for a research update from Jamshid Arjomand, FSHD Society's Chief Science Officer. We will also discuss Texas events like the Ft. Worth Walk & Roll and Central Texas Tacos & Tunes. We can't wait to "see"... Read More »

Drum & Roll Kickoff

Western PA Virtual Pittsburgh, PA

Thursday, September 1, 2022 6:00pm ET Via Zoom We hope you'll join us virtually on September 1st for our official kickoff of the Western Pennsylvania Chapter's 2022 Drum & Roll celebration! The Drum & Roll to Cure FSHD is a unique and fun event, featuring West African music and dance - and can be adapted to... Read More »

2022 San Diego Walk & Roll to Cure FSHD

Harbor Island Park 1875 Harbor Island Dr., San Diego, CA

Please mark your calendars for the 2022 San Diego Walk & Roll to Cure FSHD! We will see you on Saturday, September 10, 2022 Please reach out to the Chapter and Walk Leader, Amy Bekier, with any questions! She can be reached at SanDiegoChapter@FSHDSociety.org. We look forward to seeing you on September 10th!

2022 Pacific Northwest Walk & Roll to Cure FSHD

Town Square Park 31600 Pete von Reichbauer Way S,, Federal Way, WA

Please mark your calendars for the 2022 Pacific Northwest Walk & Roll to Cure FSHD! We will see you on Saturday, September 10, 2022 Please reach out to the Walk Leader, Selina Lai, with any questions! She can be reached at PNWWnR@FSHDSociety.org. We look forward to seeing you on September 10th!

Greater Philadelphia Chapter Meeting

Wissahickon Valley Public Library, Community Room 650 Skippack Pike - Blue Bell, Blue Bell, PA

Greater Philadelphia Chapter meeting Saturday, Sept. 10th, 10:00am – 12:00pm ET Wissahickon Valley Public Library 650 W Skippack Pike, Blue Bell, PA 19422 We hope you can join us for the next meeting of the Greater Philadelphia Chapter! This will provide an opportunity to discuss the Fulcrum trial and several other topics. There is so... Read More »

2022 Colorado Walk & Roll to Cure FSHD

Philip S. Miller Park 1375 W Plum Creek Parkway, Castle Rock, CO

Please mark your calendars for the 2022 Colorado Walk & Roll to Cure FSHD! We will see you on Sunday, September 11, 2022 Please reach out to the Walk Leader, Anne Babcock, with any questions! She can be reached at COWnR@FSHDSociety.org. We look forward to seeing you on September 11th!

2022 Southwest Florida Walk & Roll to Cure FSHD

Baker Park 50 Riverside Circle, Naples

Please mark your calendars for the 2022 Southwest Florida Walk & Roll to Cure FSHD! We will see you on Sunday, September 11, 2022 Please reach out to Walk Leader, Heloise Hoffmann, with any questions! She can be reached at SWFloridaChapter@FSHDSociety.org. We look forward to seeing you on September 11th!

2022 Intermountain Walk & Roll to Cure FSHD

Canyon Rim Park East Pavillion 3100 S Grace Street, Millcreek, UT

Please mark your calendars for the 2022 Intermountain Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to the Walk Leader, Kathryn Pyne, with any questions! She can be reached at UtahWnR@fshdsociety.org. We look forward to seeing you on September 17!  

2022 Kansas City Walk & Roll to Cure FSHD

Kansas City Kansas City, MO

Please mark your calendars for the 2022 Kansas City Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to the Walk Leader, Kiley Higgs, with any questions! She can be reached at KansasCityChapter@FSHDSociety.org. We look forward to seeing you on September 17th!

2022 Canadian National Virtual Walk & Roll to Cure FSHD

Virtual TX

Please mark your calendars for the 2022 Canadian National Virtual Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to us, with any questions!  Info@FSHDSociety.org. We look forward to  September 17th!  

2022 Columbus Walk & Roll to Cure FSHD!

Coffman Park Pavillion 5200 Emerald Pkwy, Dublin, OH

Please mark your calendars for the 2022 Columbus Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to the Chapter Director, Sue Aumiller, with any questions! He can be reached at ColumbusChapter@FSHDSociety.org. We look forward to seeing you on September 17th!

2022 Ontario Walk & Roll to Cure FSHD

Lake Aquitaine Park 6655 GLEN ERIN DR, Mississauga, Ontario

Please mark your calendars for the 2022 Ontario Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to the Walk Leader, Steve Johnston, with any questions! He can be reached at OntarioWnR@FSHDSociety.org. We look forward to seeing you on September 17th!

2022 Dakotas Walk & Roll to Cure FSHD

Urban Plains Park 3020 51st Street, Fargo, ND

Please mark your calendars for the 2022 Dakotas Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to the Walk Leader, Bryan Domholt, with any questions! He can be reached at DakotasChapter@fshdsociety.org. We look forward to seeing you on September 17!

2022 Wisconsin Virtual Walk & Roll to Cure FSHD

Wisconsin WI

Please mark your calendars for the 2022 Wisconsin Virtual Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to the Walk Leader, Tim Hollenbeck, with any questions! He can be reached at WisconsinChapter@fshdsociety.org. We look forward to "seeing" you on September 17!

2022 St. Louis Walk & Roll to Cure FSHD!

Hawk Ridge Park 8392 Orf Road, Lake St. Louis, MO

Please mark your calendars for the 2022 St. Louis Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to the Chapter Director, Marsha Sverdrup, with any questions! He can be reached at StLouisChapter@FSHDSociety.org. We look forward to seeing you on September 17th!  

2022 South Carolina Virtual Walk & Roll

South Carolina SC

Please mark your calendars for the 2022 South Carolina Virtual Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to Walk Leader, Sam Miller, with any questions! He can be reached at SouthCarolinaChapter@FSHDSociety.org. We look forward to seeing you on September 17th!

2022 Arizona Walk & Roll to Cure FSHD

Arizona AZ

Please mark your calendars for the 2022 Arizona Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to the Walk Leader, Ally Roets, with any questions! She can be reached at ArizonaChapter@FSHDSociety.org. We look forward to seeing you on September 17!

2022 Chicago Walk & Roll to Cure FSHD

Chicago IL

Please mark your calendars for the 2022 Chicago Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to the Walk Leader, Susie Kanewske, with any questions! She can be reached at ChicagoChapter@FSHDSociety.org. We look forward to seeing you on September 17!    

2022 North Carolina Virtual Walk & Roll to Cure FSHD

North Carolina NC

Please mark your calendars for the 2022 North Carolina Walk & Roll to Cure FSHD! Join us virtually from your favorite park, neighborhood, or trail! Saturday, September 17, 2022 Please reach out to the Walk Leader, Meredith Huml, with any questions! She can be reached at NCChapter@FSHDSociety.org. We look forward to "seeing" you on September... Read More »

2022 Philadelphia Virtual Walk & Roll

Philadelphia PA

Please mark your calendars for the 2022 Philadelphia Virtual Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out with any questions! Wecan be reached at FSHCommunity@FSHDSociety.org. We look forward to seeing you on September 17th!

2022 Bay Area Walk & Roll to Cure FSHD

Please mark your calendars for the 2022 Bay Area Walk & Roll to Cure FSHD! We will see you on Sunday, September 18, 2022 Please reach out to the Chapter and Walk Leaders, Sue and Kent Drescher, with any questions! She can be reached at BayAreaChapter@FSHDSociety.org. We look forward to seeing you on September 18th!

2022 West Michigan Walk & Roll to Cure FSHD

First Reformed Church 301 Washington Ave, Grand Haven, MI

Please mark your calendars for the 2022 West Michigan Walk & Roll to Cure FSHD! We will see you on Saturday, September 24, 2022 Please reach out to the Walk Leader, with any questions! We look forward to seeing you on September 24!

2022 North Texas Walk & Roll to Cure FSHD

Dallas Dallas, TX

Please mark your calendars for the 2022 North Texas Walk & Roll to Cure FSHD! We will see you on Saturday, September 24, 2022 Please reach out to the Walk Leader, with any questions! We look forward to seeing you on September 24!

2022 Virginia Walk & Roll to Cure FSHD

Virginia VA

Please mark your calendars for the 2022 Virginia Walk & Roll to Cure FSHD! We will see you on Saturday, September 24, 2022 Please reach out to the Walk Leader, Jodie Howell, with any questions! She can be reached at VirginiaChapter@fshdsociety.org. We look forward to seeing you on September 24!  

2022 Mid-Atlantic Walk & Roll to Cure FSHD

Mid-Atlantic DC

Please mark your calendars for the 2022 Mid Atlantic Walk & Roll to Cure FSHD! We will see you on Saturday, September 24, 2022 at the Alpha Ridge Park in Marriotsville, MD! Please reach out to the Walk Leader, Ann Kolakowski, with any questions! She can be reached at MidAtlanticChapter@FSHDSociety.org. We look forward to seeing you... Read More »

2022 NE Florida Walk & Roll to Cure FSHD

Jacksonville Jumbo Shrimp Baseball Stadium 301 A. Philip Randolph Boulevard, Jacksonville, FL

Please mark your calendars for the 2022 NE Florida Walk & Roll to Cure FSHD! We will see you on Saturday, September 24, 2022 for a pregame picnic at the Jacksonville Jumbo Shrimps baseball game! Please reach out to the Walk Leader, Christi Thissen, with any questions! She can be reached at NEFloridaChapter@FSHDSociety.org. We look forward... Read More »

2022 Minnesota Walk & Roll to Cure FSHD

Mount Normandale Lake Bandshell 5901 West 84th Street, Bloomington, MN

Please mark your calendars for the 2022 Minnesota Walk & Roll to Cure FSHD! We will see you on Sunday, September 25, 2022 Please reach out to the Chapter Director, Jacob Wise, with any questions! He can be reached at MinnesotaChapter@FSHDSociety.org. We look forward to seeing you on September 18th!

“All of Me” play & Chapter reception

Boyd-Quinson Stage 30 Union Street, Pittsfield, MA

Dear FSHD Society friends, We want to make sure that you know about a fantastic opportunity to support a fellow FSHD’er: The world premiere of the play, All of Me, is showing at the Barrington Stage Company in Pittsfield, MA! The lead character is played by Madison Ferris, actress and Broadway star living with FSHD.... 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 Texas Virtual Chapter Meeting

Virtual TX

North Texas Chapter Thursday, September 28, 2022 7:00pm-8:00pm CT Join Us Virtually HERE Please join us on Wednesday, September 28th for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to "see" you there! ~Glen Denehie, North Texas Chapter Director

2022 New England Walk & Roll to Cure FSHD

Boston Boston, MA

Please mark your calendars for the 2022 New England Walk & Roll to Cure FSHD! We will see you on Saturday, October 1, 2022 Please reach out to the Walk Leader, Lexi Pappas, with any questions! She can be reached at AlexiPappas19@gmail.com. We look forward to seeing you on October 1!