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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 receiving mobility devices and assistance, and accessibility in nature and outdoor environments. Share your thoughts, or post questions in the comments section. You can also […]
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 to celebrate the anniversary of our chapter's launch! Come celebrate with our Idaho community as we reflect on the amazing work we've done as a […]
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 us for our upcoming chapter meeting! Anna Gilmore of FSHD Society will deliver an update re: current clinical trials and the clinical trial enrollment process.
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 bi-monthly meeting - to provide consistent communication and camaraderie among our group. PLEASE RSVP to receive the Zoom link. Hope to “see” you there! Warmly, David […]
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 New Year Greetings to our PNW FSHD Community! We are looking forward to having our first meeting of the year in Portland, Oregon on Feb. […]
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 her inspiring journey into Universal Design as a means to create flexible and age-friendly living spaces, driven by her personal experience with FSHD. Through the […]
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 to monitor and manage breathing issues that can arise in people with FSHD. Our presenter, Andrea Klein, founded Breathe with MD, Inc. in memory of […]
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 we plan to cover include: 1. Meet our new FSHD Society Regional Director - Jenny Gast 2. Updates on what’s happening in the FSHD community […]
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 […]
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 7pm - 8pm Eastern. No set agenda, this is simply a time for us to gather together and share our updates and adventures. RSVP via […]
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 clinical trials, upcoming events, and formally meet Jenny Gast - our new FSHD Society Regional Director. We will also showcase some great talent from right […]
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 […]
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 Pour your favorite beverage and come here the great news - FSHD 360 is coming to Texas! Join us for a virtual happy hour where […]
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 […]
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 Goat (3111 Preston Rd, Frisco, TX) DETAILS: We will be hosting an in-person lunch on March 23rd in Frisco, TX. This lunch will be at […]
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, 2024 - 3pm MT WHERE: Lansdowne Arms, Library Room - 9352 Dorchester St., Highlands Ranch, CO 80129 WHAT: Special Guest Speaker will be Caitlin Prechel […]
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 for our next virtual meeting, Saturday, April 6th, 2024 at 9am ET. This is the next in our series of regular bi-monthly meetings to provide […]
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, IL 60164 DETAILS: Join us on Saturday, April 6th at the Northlake Library for a special chapter meeting where we'll introduce our new Chicagoland Chapter […]
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 via Zoom, please RSVP below to receive the Zoom link What: We are excited to have special guest Lena Graham joining us! Lena is a […]
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 […]
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 month's webinar will be a roundtable discussion on the challenges of communicating with those close to you about FSHD, how it is impacting you, and […]
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 in the Edmonton Area. We haven’t been successful in doing this with our last two events, and would love your feedback. What would you like […]
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 […]
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 L4B 4L9). Two of our members, Scott and Ali, will be sharing their experience with participating in the Fulcrum and Avidity interventional FSHD clinical trials. […]
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 […]
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 DETAILS: Join us for a Dakotas Chapter Meeting where we will have the opportunity to connect and share updates with the community. This meeting will […]
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 […]
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 of the Mile-High City. REGISTER today and join our Team to fight FSH Muscular Dystrophy. The event starts at Denver’s City Park, on the east side […]
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 & Blackies. I look forward to meeting all of you in person! Floyd & Blackies: 142 8th Avenue, Cramerton, NC 28032 Please RSVP below so […]
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 chapter meeting. In addition to checking in with everyone, I would like to share my latest experiences at the Abilities Expo and the Day on […]
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 22nd! We will discuss what's new with the FSHD Society, upcoming events on the calendar, as well as share adventures and stories amongst ourselves. Our […]
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 with old friends or make some new. It's been a little over a month since we gathered as a community together for the Texas FSHD […]
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 ET. No set agenda, this is simply a time for us to gather together and share our updates and adventures. RSVP via the below button […]
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 Stadium, 2502 S Tyler St, Tacoma, WA 98405 Details: Greetings my PNW FSHD Chapter friends! SUMMER is just around the corner and that means time […]
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. […]
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 Sue Drescher, will be hosting a morning watch party of the FSHD Society Patient Connect Conference that will be taking place that same morning in […]
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 […]
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 FORTITUDETM study on FSHD University. The Avidity team, joined by Dr. Jeffrey Statland, University of Kansas Medical Center and FORTITUDE trial investigator, will present in-progress […]
8:30pm ET | 7:30pm CT | 6:30pm MT | 5:30pm PT BC Chapter -Â 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. […]
2:00pm ET | 1:00pm CT | 12:00pm MT | 11:00am PT Virginia Chapter Celebration of World FSHD Day Saturday, June 22, 2024 from 2:00 pm - 4:00 pm ET at Billsburg Brewery, 2054 Jamestown Rd, Williamsburg, VA 23185 Join us for a relaxing social gathering on June 22nd to celebrate World FSHD Day! Please RSVP […]
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 - 3pm ET at Tunnel Park (66 Lakeshore Ave, Holland, MI 49424 - North Picnic Pavilion). Hot dogs, chips and water will be provided, along […]
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 virtual meeting. We will have a guest presenter, Christine Arseneault, who will share ways to stay active outdoors with FSHD. Christine is a resident of […]
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 where we have some exciting updates to share. This will include updates from the Connect Conference that took place in June, as well as the […]
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 founder of Team FSHD Cycling. Since 2017, the team participates in endurance bicycle events to raise awareness and funds for the FSHD Society, the global […]
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 other support. We will also discuss recent FSHD Society updates as well as details for our August picnic. Please RSVP to ensure you receive 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 rpt The foods you eat impact your disease and can support improved muscle function in combination with supplementation and exercise. Using real FSHD patient food records, we will explore the journey to better nutrition […]
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) Address: 1519 Silas Deane Highway, Rocky Hill, CT 06067 Please join us for this fun, community-building event to share adventures and stories! We will enjoy […]
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 event where we can be in community and enjoy time together. The picnic will be held at Adams Township Community Park, 698 Valencia Rd., Mars, […]
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 […]
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, will be screened in 50 AMC Theaters across the US on August 15th! "Good Bad Things" brings authentic disability representation to the big screen, challenging […]
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 sea, giving back to the community and promoting running, health and fitness! The race happens at 9:00am on Sunday, August 18. This is our second […]
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 with Dyne Therapeutics to present the 2024 The Muscle to Keep Life Moving™ fundraising event to provide care and support, including, critically important mobility equipment, […]
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 Walk and Roll our best one yet! Please fill out the RSVP form at the link above to receive the Zoom link for this virtual […]
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 St. Louis Chapter members to join us on Tuesday, August 20th for our upcoming Chapter Meeting at Webster Groves Public Library. During this time, our […]
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 event this August. During this time, we will share updates from the 2024 Patient Connect Conference, get people excited for the 2024 Minnesota Walk & […]
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 24 at Harbor Ballpark! We have reservations at 6:00pm for the Norfolk Tides vs Worcester Red Sox. There are 5 ADA seats and 15 other […]
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 Hilltop Community Park, 9711 Oviedo Way, 92129 Join us for some ice cream to celebrate and get excited our upcoming Walk & Roll in September. […]
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, followed by an open Q&A session about participating in clinical trials, the drug development process, the potential new drugs that are in the pipeline, or […]
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 […]
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 the 2024 Drum and Roll our best one yet! Learn how to navigate the Drum & Roll website and use it to up your fundraising […]
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 Regional Director, Jenny Gast, will give an update on the 360 Event taking place on 11/2 Opportunity to connect and network with each other RSVP […]
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 entering the era of new therapies, Kelly Maynard, President and Founder and Amy Aikins, Director of Patient Access from the Little Hercules Foundation, will give […]
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 Friday, September 20 through 11:59pm PST on Sunday, September 22. Streaming access costs $19.99; you will have 72 hours to watch the film. Help spread […]
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 and adventures, AND talking about our upcoming Walk & Roll to Cure FSHD on October 12th! Please RSVP using the button below to receive the […]
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 presenting slides indicating how much is going on regarding FSHD treatments & muscle regeneration (especially here in Canada), letting people know that there are still […]
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 […]
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 meeting with Julie Brown, PT, DPT, NCS, ATP/SMS, who has worked with multiple FSHD patients and can offer guidance for individuals at different stages of […]
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 losmapimod, the first drug to reach a Phase 3 clinical trial in FSHD. We’ll also discuss our upcoming Drum and Roll to Cure FSHD! Please […]
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 filmmaker Shane Stanger will discuss their pathbreaking feature film, Good Bad Things. The film tells the captivating story of Danny, an entrepreneur with FSHD who defies […]
Chicago Chapter Virtual Meeting Wednesday, October 23, 2024 | 4:00-5:00pm CT Join us to discuss chapter updates and start thinking about activities for next year. We will also have the opportunity to connect and support one another.
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 […]
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 virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to […]
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 […]
Pacific Northwest Chapter Winter Education Meeting November 2, 2024, Noon to 2pm Topic: Strength Training for Rehabilitation and Maintenance in FSHD. Our guest speaker will be Alex Walker of Walker Weightlifting. Together with a few of his FSHD clients Alex will share: - insights into the benefits of strength training for rehabilitation and maintenance in […]
2024 Drum & Roll to Cure FSHD Sunday, November 3, 2024, 1:00pm National Aviary - The Garden Room - Pittsburgh, PA In this unique and amazing event, FSHD warriors will come together to raise funds toward development of treatments for FSH Muscular Dystrophy! Yamoussa Camara is the Director of African Music & Dance Ensemble at […]
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 virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to […]
Colorado Chapter Meeting (In-Person) Sunday, November 17, 2024 | 12:00-2:00pm MT, followed by the Broncos game Landsdowne Arms Restaurant 9352 Dorchester St, Highlands Ranch, CO 80129 RSVP: https://go.fshdsociety.org/l/701273/2023-03-30/4327q4 Join the Colorado Chapter for a community-building meeting where we will discuss a recap of the year and socialize with each other. We've slotted 2 hours for […]
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 […]
It's our annual Thanksgiving Special and this year we're featuring musicians living with FSHD. Tune in for interviews, instrumentals, and 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 you receive the reminder and zoom link. Please join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we […]
St. Louis Chapter Holiday Gathering Saturday, December 7th, 2:00-4:00pm CT 4Hands Brewery, 17081 N Outer 40 Rd, Chesterfield, MO 63005 RSVP: https://go.fshdsociety.org/l/701273/2023-06-22/43jsb5 Join us for a special holiday gathering to celebrate the wonderful work our chapter has done this year and the opportunity to connect with one another. Refreshments and food will be provided. Family […]
Greater NYC/NJ-area Chapter Virtual Meeting - Wednesday December 11th, 6pm ET Dear NYC & NJ area FSHD Friends, Please join our local FSHD Community for a virtual meeting by zoom on Wednesday, December 11th, at 6pm ET! Let's catch up with one another, get updates from our Summer events, and exciting updates from the FSHD […]
Western PA Chapter Virtual Meeting Monday, December 16, 2024 7:00-8:30pm ET RSVP: https://go.fshdsociety.org/l/701273/2023-05-09/439tq1 Join our virtual meeting to celebrate this year's accomplishments and to start discussing our plans for 2025! Please RSVP in order to receive the Zoom link.
NOTE CHANGE OF TIME: 9:00 pm ET | 8:00 pm CT | 7:00 pm MT | 6:00 pm PT RESCHEDULED FROM SEPTEMBER MEETING Christina's World, by Andrew Wyeth Living with FSHD can stir complex emotions that are not easy to bring to the surface or articulate. Zee Zelinski, who was diagnosed with the condition 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 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 […]
CANCELLED FOR CHRISTMAS EVE 8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care […]
18:00 PM CET | 17:00 PM UK |Â 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT This meeting has been cancelled because it falls on U.S. Thanksgiving Day. For people living with FSHD who are interested in exercise and fitness, Feeling Fit with FSHD meets on the 2nd […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Today we'll have an open discussion, starting with the topic of "new year, new opportunities." Ranae, our moderator, will also sharing something related to what we talk frequently about... what do all the terms related to […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Wheelchairs and scooters are a topic of evergreen interest to our community and some of our experts with live experiences will share their wisdom and field your questions. How you know when you will need one? What are the pros […]
New England Chapter Virtual Meeting Monday, January 13, 2025 | 7:00-8:00pm ET RSVP: https://go.fshdsociety.org/l/701273/2023-03-03/42xr1c Join us for chapter and FSHD Society updates, a debrief and takeaways from the November 2nd UMASS 360 event, and ideas for the year ahead. Additionally, we'll pose this question for discussion: How do you use your creativity and resilience for […]
NEW DATE AND TIME: Second Monday of every month 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT Join us at Everything Early Onset for a night of trivia and quizzes on sporcle.com!! Sporcle has a wide variety of categories of trivia quizzes. One of the hosts will share […]
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen […]
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 Mindfulness is a practice that has been shown in clinical trials to reduce stress, anxiety, and depression, issues that many people living with a progressive condition like FSHD experience. These psychological symptoms can in […]
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Dear friends, Welcome to the "Third Thursday" meetings of the North Carolina Chapter! Whether or not you've attended our group's events before, we hope you will join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we are […]
Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Our guest this month is Mark Tarnopolsky, MD PhD, professor of pediatrics and medicine and director of the Neuromuscular and Neurometabolic Clinic at McMaster University Medical Center in Hamilton, Ontario, Canada. Dr. Tarnopolsky is also CEO […]
Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Heloise Hoffmann Heloise Hoffmann, now a student at Stanford University, explains the science of FSHD to your kids (and you) in easy-to-understand terms. She'll answer your questions and discuss the new treatments that are being developed, including some […]
Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK |Â 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT We are thrilled to welcome back Lonwabo Nene, a South African living with FSHD who previously led a great session on exercises that have made a difference to […]
Pacific Northwest Chapter New Year Meeting DATE: Saturday, January 25, 2025 TIME: 12:00 to 2:00pm PT WHERE: Both in-person at the Sellwood-Moreland Library Community Room (7860 SE 13th Ave, Portland, OR) and virtual via Zoom. Please RSVP for the Zoom link. DETAILS: Trish Kean has been a licensed massage therapist since 1998 and has had […]
