Meeting Invitation Thursday, November 16, 2023 7:00 - 8:00pmET Via Zoom Join us for our next Michigan Chapter Meeting on Thursday, November 16th, from 7:00 - 8:00 p.m. ET! We'll be celebrating our 2023 Walk... Read More »
Join us for FSHD Radio’s first-ever Thanksgiving Special as we come together and give thanks for the strength and resilience that make our community shine. This year, we want to... Read More »
Tune in to a special FSHD Radio episode! Emma Weatherley, Managing Director of FSHD Global, joins Tim to share exciting news: Michael Dickson of the Seattle Seahawks is raising FSHD... Read More »
FSHD is in the national spotlight! Emma Weatherley, Managing Director of FSHD Global, joins Tim to share exciting news: Michael Dickson of the Seattle Seahawks is raising FSHD awareness. The... Read More »
Date and Time: Wednesday December 6, 2023 at 6:00pm PT Location: Virtually by Zoom: RSVP HERE to receive the zoom link Details: Please join us for a little virtual Holiday Cheer!... Read More »
MEETING: British Columbia Chapter - Virtual Meeting DATE: Thursday, December 7th, 2023 TIME: 6:00pm PT WHERE: Virtually, via ZOOM. Please RSVP HERE to receive the Zoom link. DETAILS: With the Holidays quickly... Read More »
Join us for a virtual social gathering before the Holidays! Thursday, December 7th, 2023 - 7:00pm ET via ZOOM Hello Ontario friends, I hope you can join us for a... Read More »
Join us for a virtual meeting! Saturday December 9th, 2023 at 9am ET Dear Friends, I hope you can join us for the first of a series of regular bi-monthly... Read More »
Hello Friends! I hope you can join us for a Holiday Social Gathering! WHEN: Sunday, December 10, 2023, 3-6pm MT WHERE: Lansdowne Arms - 9352 Dorchester St. in Highlands Ranch.... Read More »
Dancing with differences: A Moving Celebration of the Season 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us for a joyous and... Read More »
Tuesday, December 12th In this episode, Tim chats with Michael Osborne, a fellow Milwaukeean and baseball coach living with FSHD. Michael and Tim share the story of how they met... Read More »
EVENT: Sacramento Chapter Holiday Gathering DATE: Thursday, December 14, 2023 TIME: 6:00 pm - 8:00 pm PT WHERE: Mimi's Cafe 2029 Alta Arden Expy, Sacramento, CA 95825 DETAILS: Many of our chapter members have... Read More »
Wellness Hour Monthly Meeting 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT The Wellness Hour is open to everyone in the FSHD community.... Read More »
St. Louis Chapter Holiday Gathering DATE: Saturday, December 16, 2023 TIME: 2:00pm - 5:00pm CT WHERE: 4Hands Brewery, 17081 N Outer 40 Rd, Chesterfield, MO 63005 DETAILS: Join us for a special holiday... Read More »
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... Read More »
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... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We're starting the new year off with an ice breaker online card game. Kind of... Read More »
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,... Read More »
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... Read More »
Bay Area Chapter Meeting DATE: Sunday, January 14, 2024 TIME: 1:00 pm - 3:00 pm PT WHERE: Stanford, Hoover Pavillion, Room 204, 211 Quarry Rd, Palo Alto, CA 94304 DETAILS: Please join the Bay... Read More »
Join host Tim Hollenback and special guest Chelsea Moeller for a discussion of living with FSHD, from diagnosis to trial participation. Tim also teases some updates to FSHD Radio. On... Read More »
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... Read More »
6:00pm ET | 5:00pm CT | 4:00pm MT | 3:00pm PT Virginia Chapter Monthly Virtual Meeting (occurs every 4th Tuesday of the month). RSVP via the below button to ensure... Read More »
Join us for a Virtual Meeting! Please join us for our "Welcome to 2024" meeting, with lots of exciting news about current and upcoming clinical trials, as well as our... Read More »
Join host Tim Hollenback for a special conversation with Marisa Spain. Marisa, known for Disabled in Nature, her YouTube channel and Instagram, discusses living with Early On-Set FSHD, barriers to... Read More »
Idaho Chapter Anniversary Dinner DATE: Thursday, January 25, 2024 TIME: 6:30 - 8:30 pm MT WHERE: Louie's Pizza & Italian Restaurant, 2500 E Fairview Ave, Meridian, ID 83642 DETAILS: Join us for a special dinner... Read More »
7:00pm ET | 6:00pm CT| 5:00pm MT | 4:00pm PT EVENT: Columbus Chapter Meeting DATE: Wednesday, January 31, 2024 TIME: 7:00 pm – 8:00 pm EST WHERE: Zoom DETAILS: Join... Read More »
8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday of the month for a... Read More »
8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting, 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a... Read More »
9:00am ET | 8:00am CT | 7:00am MT | 6:00am PT Join us for a virtual meeting! Saturday, February 10th at 9am ET Dear Friends, Join us for our regular... Read More »
3:00pm ET | 2:00pm CT | 1:00pm MT | 12:00pm PT Pacific Northwest Chapter Meeting, 12:00-2:00pm PT at the Sellwood Library Meeting Room Address: 7860 SE 13th Ave, Portland 97202... Read More »
Tuesday, February 13th In this month's Community Profiles episode, Tim sits down with Jane Nemke, an accredited International Association Color Consultant and the founder of Designs to Thrive. Jane shares... Read More »
Breathing with FSHD, Andrea Klein 19:00 CET | 18:00 UK | 1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Today’s webinar discusses how... Read More »
Tuesday, February 27th We’re thrilled to share a conversation with Danny Kurtzman and Shane Stanger, the duo behind Good Bad Things! Their film is currently making waves (and taking home... Read More »
7:00-8:00pm ET | 6:00-7:00pm CST | 5:00-6:00pm MT | 4:00-5:00pm PT Please join us for a virtual chapter meeting on Wednesday, February 28, 2024, from 7:00pm - 8:30pm Eastern. Items... Read More »
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... Read More »
7PM ET | 6PM CT | 5PM MT | 4PM PT Michigan Chapter - Virtual Meeting Please join us for a virtual chapter meeting on Tuesday, March 5, 2024, from... Read More »
7PM ET | 6PM CT | 5PM MT | 4PM PT New England Chapter - Virtual Meeting Please join us for another great virtual chapter meeting! We will discuss current... Read More »
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... Read More »
7-8pm ET | 6-7pm CT | 5-6pm MT | 4-5pm PT Texas Virtual Happy Hour, Sunday, March 17, 2024 TIME: 6:00 pm - 7:00 pm CT WHERE: Virtually via Zoom... Read More »
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... Read More »
3:00-5:00pm ET | 2:00-4:00pm CT | 1:00-3:00pm MT | 12:00-2:00pm PT North Texas Chapter Come Together Lunch, Saturday, March 23, 2024 from 2:00 pm - 4:00 pm CT WHERE: Rodeo... Read More »
3:00pm MT | 2:00 PT | 5:00pm ET | 4:00pm CT | Hello Friends! I hope you can join us for our first meeting of 2024! WHEN: Saturday March 23rd,... Read More »
9:00am ET | 8:00am CT | 7:00am MT | 6:00am PT NYC/NJ-area Virtual Chapter Meeting Saturday, April 6th, 2024 at 9am ET Dear Friends, Please plan to join us... Read More »
2:00-400pm | 1:00-3:00pm CT | 12:00-2:00pm MT | 11:00a-1:00pm Chicago Chapter Meeting, Saturday, April 6, 2024 from 1:00 - 3:00 pm CT WHERE: Northlake Library, 231 N Wolf Rd, Northlake,... Read More »
9:00pm ET | 8:00pm CT | 7:00pm MT | 6:00pm PT British Columbia and Alberta Chapters - Virtual Meeting When: Wednesday April 10th, 6pm PT | 7pm MT Where: Virtually... Read More »
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... Read More »
With Jennifer Egert, PhD, and patients and family members 19:00 CET | 18:00 UK | 1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00am PT This... Read More »
CANCELEED Due to the lack of RSVPs, we have sadly decided to cancel this event. One of the goals of our Alberta Chapter is to grow our connections and community... Read More »
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... Read More »
11:00am ET | 10:00am CT | 9:00am MT | 8:00am PT Ontario Chapter Brunch Meeting Saturday April 27th, 11:00am-1:00pm ET Milestones Richmond Hill (30 High Tech Rd. Richmond Hill ON... Read More »
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... Read More »
11:30am-12:30pm | 10:30-11:30am CT |9:30-10:30am MT | 8:30-9:30am PT Dakotas Chapter Meeting, Saturday, May 11, 2024 10:30 am - 11:30 am CT WHERE: 3247 47th St S, Fargo, ND 58104... Read More »
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... Read More »
Saturday, May 18, 2024 Join the Denver Colfax Marathon Team for the FSHD Society! The Denver Colfax Marathon is a nationally recognized event featuring unique courses incorporating the iconic landmarks... Read More »
5:00pm ET | 4:00pm CT | 3:00pm MT | 2:00pm PT North Carolina Chapter Social Gathering Please join us for a casual dinner on May 18th at 5pm at Floyd... Read More »
7PM ET | 6PM CT | 5PM MT | 4PM PT Western PA Chapter - Virtual Meeting Please join us on Monday, May 20th at 7:00pm ET for our next virtual... Read More »
7PM ET | 6PM CT | 5PM MT | 4PM PT New England Chapter - Virtual Meeting Please join us for our next virtual chapter meeting, taking place on May... Read More »
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Texas Community Social Hour Wednesday, June 5, 2024 Join us for a special Texas Social Hour and come catch-up... Read More »
7PM ET | 6PM CT | 5PM MT | 4PM PT Michigan Chapter Virtual Meeting Join us at our next virtual chapter meeting, scheduled for Thursday, June 6th at 7pm... Read More »
4:00-7:00pm ET | 3:00-6:00pm CT | 2:00-5:00pm MT | 1:00-4:00pm PT Pacific Northwest Day at the Ball Park Sunday, June 9, 2024, 1:00 pm - 4:00 pm PT WHERE: Cheney... Read More »
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,... Read More »
Bay Area Chapter Meeting: Connect Watch Party Join the Bay Area Chapter for a special summer chapter meeting this year in Hollister, CA. Our Bay Area Chapter Directors, Kent and... Read More »
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... Read More »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT This World FSHD Day join the Avidity Biosciences team as they share an update on the... Read More »
5:30pm MT (4:30pm PT | 7:30pm ET | 6:30pm CT) Alberta Chapter - World FSHD Day Celebration Hello Alberta Chapter Friends!! WHAT: On World FSHD Day, June 20, we are... Read More »
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,... Read More »
11AM - 3PM ET Summer Park Party - Michigan Chapter Please join us for an in-person social gathering on June 23rd. We are planning a summer park party from 11am... Read More »
9:00-10:00pm ET | 8:00-9:00pm CT | 7:00-8:00pm MT | 6:00-7:00pm PT Sacramento Virtual Chapter Meeting Wednesday, July 10, 2024 6:00-7:00pm PT on Zoom Join the Sacramento Chapter for our upcoming... Read More »
7:00-8:00pm ET | 6:00-7:00pm CT | 5:00-6:00pm MT | 4:00-5:00pm PT Chicago Chapter Virtual Meeting Thursday, July 11, 2024 via Zoom Join us for our upcoming virtual Chicago Chapter Meeting... Read More »
Saturday, July 13, 2024 The Triple Bypass The Triple Bypass stretches 118 miles, with 10,800 feet of elevation gain over 3 mountain passes: Juniper, Loveland, and Vail. George is the... Read More »
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Western PA Virtual Chapter Meeting Wednesday, July 17th, 7:00pm ET We will gather for conversation and to provide each... Read More »
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 rpt The foods you eat impact your disease and... Read More »
12-2pm ET | 11a-1pm CT | 10a-12pm MT | 9-11am PT New England Chapter In-Person Social Gathering Friday, July 19, 2024 from 12:00-2:00pm ET at On the Border (Rocky Hill)... Read More »
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Team Captain Rally & Social Hour Wednesday, July 31st Join us for our annual Team Captain Rally where we... Read More »
Western PA Chapter 3rd Annual Family Picnic Saturday, August 3rd, 12:00pm ET Location: Adams Township Community Park, 698 Valencia Rd., Mars, PA 16046 Please join us for this fun, in-person... Read More »
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... Read More »
Good Bad Things Theatrical Premiere For nearly a year, we’ve been following the journey of "Good Bad Things," and now, the award-winning film starring Danny Kurtzman, who lives with FSHD,... Read More »
Sunday, August 18, 2024 2024 Falmouth Road Race The 2024 ASICS Falmouth Road Race promises to be an exciting event celebrating 52 years of running the iconic course along the... Read More »
The Muscle to Keep Life Moving™ Monday, August 19, 2024 9:00am-6:00pm ET The Cape Club of Sharon: 25 Tiot St, Sharon MA 02067 The FSHD Society is pleased to partner... Read More »
Atlanta Chapter Virtual Meeting: Walk & Roll Prep Monday, August 19th, 5:30-6:30pm ET Join our virtual meeting for a group brainstorm and discussion on how we can make the 2024... Read More »
St. Louis Chapter In-Person Support Meeting Tuesday, August 20th, 2024, 7:00-8:00pm CT Webster Groves Public Library - 301 E Lockwood Ave, Webster Groves, MO 63119 We invite all of our... Read More »
12:00-2:00pm ET | 11:00am-1:00pm CT | 10:00am-12:00pm MT | 9:00am-11:00am PT Dakotas Chapter Meeting Saturday, August 24, 2024 Location: TBD Restaurant Join the Dakotas Chapter for a special community lunch... Read More »
Virginia Chapter Social Event: Norfolk Tides vs. Worcester Red Sox Saturday, August 24, 2024 at 6:00pm Harbor Park Stadium, 150 Park Ave, Norfolk, VA 23510 Please join us on August... Read More »
6:30pm ET | 5:30pm CT | 4:30pm MT | 3:30pm PT San Diego Chapter Ice Cream Social Sponsored by Kate Therapeutics Sunday, August 25, 2024 from 3:30 - 5:30pm PT... Read More »
Southeast Multi-Chapter Virtual Meeting Tuesday, August 27, 2024 at 6:00pm ET Amy Halseth and Erika Escartin from Avidity Biosciences will give a short presentation on the recent data from FORTITUDE,... Read More »
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... Read More »
Western PA Chapter Drum & Roll Prep Virtual Meeting Thursday, August 29, 2024 7:00-8:30pm ET RSVP here: go.fshdsociety.org/l/701273/2023-05-09/439tq1 Join our virtual meeting for a discussion on how we can make... Read More »
First Friday of every month 8:00 p.m. ET | 7:00 p.m. CT | 6:00 p.m. MT | 5:00 p.m. PT The Everything Early Onset group hopes to engage adults of... Read More »
New England Virtual Chapter Meeting Thursday, September 12, 2024 at 7:00 PM Meeting Agenda: Walk Leader, Lexi Pappas, will briefly talk about the Walk & Roll taking place on 9/22... Read More »
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 Insurance Coverage for Costly Rare-Disease Treatments As FSHD is... Read More »
Virtual Screening: Good Bad Things Missed seeing Good Bad Things in theaters? Get your tickets for a virtual screening this weekend. The film will be available from 6:00pm PST on... Read More »
Virginia Chapter Monthly Virtual Meeting Tuesday, September 24th, 6:00pm ET Please join us for this casual, conversational monthly meeting. We look forward to catching up with everyone, sharing our updates... Read More »
Alberta Chapter Virtual Meeting All Canadian FSHD Community Members Welcome Wednesday, October 2, 2024 7:00pm - 8:00pm MT RSVP: https://go.fshdsociety.org/l/701273/2023-01-17/42q91r Following the disappointing news from Fulcrum, Neil Camarta will be... Read More »
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... Read More »
Greater Philadelphia Chapter Meeting Saturday, October 5, 2024, 10:00am-1:00pm ET Location: Bryn Mawr Rehabilitation Hospital - 414 Paoli Pike, Malvern PA 19355 RSVP here: https://go.fshdsociety.org/l/701273/2023-02-14/42vknk Please join us for this... Read More »
Western PA Chapter Virtual Meeting Tuesday, October 8, 2024 | 7:00-8:00pm ET RSVP: https://go.fshdsociety.org/l/701273/2023-05-09/439tq1 Join our virtual meeting to talk about the disappointing news that Fulcrum has halted development of... Read More »
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 Good Bad Things Actor and screenwriter Danny Kurtzman and... Read More »
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... Read More »
