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 meetings to provide consistent communication and camaraderie among our group. This first meeting will be virtual via zoom PLEASE RSVP to receive the Zoom link.... 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. WHAT: Please join us for a holiday social gathering featuring a white elephant gift exchange (details below). Drinks and appetizers will be provided. We hope... 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 energizing Chair Dance Party to celebrate the winter and holiday season. Bring your favorite libation and be prepared to shake, rattle and roll to dance... 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 by chance on the baseball field and what it means to come across another person who understands the experience of having FSHD. Michael, a dad... Read More »
18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Join us this month for a session with Trish Kean on Shaking Qigong. Trish has been a licensed massage therapist since 1998 and has had a daily Qigong practice since 2005. In... 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 requested the opportunity to gather for a social event during the holiday season to network, connect, and celebrate the Sacramento Chapter community we reignited this... 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 gathering to celebrate the wonderful work our chapter has done this year, the opportunity to connect with one another, and start brainstorming how we can... 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 strategies are being considered? How are different candidate drugs progressing through the process of reaching the clinic? What’s the latest on clinical trials? Nick Johnson,... Read More »
DECEMBER MEETING CANCELLED. See you in January! 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... Read More »
DECEMBER 27 MEETING CANCELLED. See you in January! 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! At meeting time, please click... 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 show that will bring you the latest and greatest from the FSHD Society, including research updates, upcoming events, and important developments to keep you updated... 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 silly but it's also an effective way to stimulate interesting conversations that will help us all get to know one another better. We hope you'll... 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, Neil Camarta and Craig Kelly of the FSHD Canada Foundation, and Dr. Dillon Chen of Arrowhead Pharmaceuticals. Amanda will be giving us an update on... 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 status of research in the FSHD community. Dr. Bill Lewis, FSHD Society board member, Clinical Professor of Cardiovascular Medicine at UC Davis Medical Center, and Director of... 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 Area chapter for our first meeting of 2024. We'll discuss updates, connect with each other, and plan for an exciting year ahead. This meeting will be held... 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 the 2nd Tuesday of every month, we will bring you a new episode of FSHD Radio: Community Profiles. This long-form show includes profiles of the... 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 FSHD patients wait for new drugs to slow the progression of muscle weakness, Dr. Voermans emphasizes that there are many interventions already that can have... 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 guest presenter, Anna Gilmore! Anna has moved to the new position of FSHD Navigator. As Navigator, she helps families by providing resources and information to... 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 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... 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 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... 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 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... 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 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.... 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 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... 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 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... 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 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... 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 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... 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 7pm - 8pm Eastern. No set agenda, this is simply a time for us to gather together and share our updates and adventures. RSVP via... 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 clinical trials, upcoming events, and formally meet Jenny Gast - our new FSHD Society Regional Director. We will also showcase some great talent from right... 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 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... 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 Pour your favorite beverage and come here the great news - FSHD 360 is coming to Texas! Join us for a virtual happy hour where... 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 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... 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 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... 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, 2024 - 3pm MT WHERE: Lansdowne Arms, Library Room - 9352 Dorchester St., Highlands Ranch, CO 80129 WHAT: Special Guest Speaker will be Caitlin Prechel... 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 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... 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, 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... 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 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... 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 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... 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 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... 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 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... 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 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... 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 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.... 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 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... 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 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... 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 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... 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 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... 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 & Blackies. I look forward to meeting all of you in person! Floyd & Blackies: 142 8th Avenue, Cramerton, NC 28032 Please RSVP below so... 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 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... 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 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... 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 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... 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 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... 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 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... 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, 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.... 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 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... 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 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... 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 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... 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, 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.... Read More »
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... 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 - 3pm ET at Tunnel Park (66 Lakeshore Ave, Holland, MI 49424 - North Picnic Pavilion). Hot dogs, chips and water will be provided, along... 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 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... 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 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... 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 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... 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 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... 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 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... 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 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... 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) 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... 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 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,... 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 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... 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, 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... 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 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... 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 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,... 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 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... 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 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... 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 event this August. During this time, we will share updates from the 2024 Patient Connect Conference, get people excited for the 2024 Minnesota Walk &... 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 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... 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 Hilltop Community Park, 9711 Oviedo Way, 92129 Join us for some ice cream to celebrate and get excited our upcoming Walk & Roll in September.... 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, 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... 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 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... 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 the 2024 Drum and Roll our best one yet! Learn how to navigate the Drum & Roll website and use it to up your fundraising... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our speaker this month addresses an important topic that affects many in our community. Elizabeth Pendo is the Kellye Y. Testy Professor of Law and Senior Associate Dean for Academic Affairs at the University of Washington School of Law, and... 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 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... Read More »
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT 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 a young child, explores her world through art,... Read More »
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Mitch Wade, a fitness trainer from Portland, Oregon, is a legend in the FSHD community for his understanding of FSHD and results he has achieved with clients to help restore strength, range of motion, and function. No one can reverse... 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 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... Read More »
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... 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 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... Read More »
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 partners (the term we... 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 and adventures, AND talking about our upcoming Walk & Roll to Cure FSHD on October 12th! Please RSVP using the button below to receive the... 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 virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to... 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 virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT UPDATE: We have reschedule for October 9 due to Rosh Hashanah falling on October 2 this year. After a move or new environment, we have to adjust to a new environment, including costs for personal... 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 presenting slides indicating how much is going on regarding FSHD treatments & muscle regeneration (especially here in Canada), letting people know that there are still... 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 Do you have any unique strategies to cope with the challenges presented by your FSHD? Perhaps you use your wheelchair as a fork lift, or have a grabber in every room of your house, or... 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 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... 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 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... Read More »
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... 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 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... Read More »
18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT UPDATE: This session is cancelled because Frank is stranded in Florida and without power due to Hurricane Milton. We hope he stays safe and look forward to seeing you all in two... Read More »
2024 Virginia Walk & Roll to Cure FSHD Saturday, October 12, 2024, 10:00am Norfolk Zoo, Norfolk, VA Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From... Read More »
