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 »
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 »
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 This month's conversation topic is "How to keep a meaningful life in retirement or when you need to stop working." Many of us find fulfillment, identify, and a sense of mattering through our work outside... 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 »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our guest this month is Diane Corrinne Buck, Gourmet Food Store Owner & Cooking enthusiast. "Having started my interest in food and cooking as a young girl, over the years I have dedicated my free time to recipe development, refining... 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 »
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 »
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 Are you a ‘Mouth Breather’? Do you wake up in the morning with a headache? This month, Frank Hanley returns to discuss the effects of ‘mouth breathing’ and how FSHD can cause... 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 »
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT We are cancelling our June meeting because the Young Adults group will be recovering from a busy, exciting several days at the FSHD Connect conference in Denver. We will be back next month! FSHD Young Professionals is a social and... Read More »
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT We are cancelling this month's meeting because we will be very busy with FSHD Connect. Join us next month for Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain... Read More »
Join us for the annual World FSHD Day to raise awareness of FSHD globally over social media on June 20th! Learn about the orange slice selfie campaign and download our toolkit HERE. We will also be celebrating this day with special FSHD Radio mini-episodes that will be released throughout the day. More details to come!
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 »
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 hosting a get-together with our Alberta Chapter members to celebrate the successes we have seen over the last year, and to raise awareness for the... 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 »
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 »
Ontario Chapter: World FSHD Day Virtual Meeting Hello Ontario Friends! We hope you can join us virtually to celebrate World FSHD Day on Thursday, June 20th at 7:00pm ET! Together, we can celebrate all the amazing things that are happening in the FSHD Community on this international day of awareness for FSHD. RSVP via the... Read More »
7:00m Hello Ontario Friends! Join us virtually to celebrate World FSHD Day on June 20th at 7:00pm! We want to celebrate all the amazing things that are happening in the FSHD Community on this International Day of Awareness for FSHD WHAT: World FSHD Day, June 20th - Virtual Chapter meeting. RSVP HERE to receive the... Read More »
8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT Atlanta Chapter Watch Party for World FSHD Day Thursday, June 20, 2024 - 8:00pm El Azteca Perimeter - 6115 Peachtree Dunwoody Rd., Ste. 100, Sandy Springs, GA 30328 Please join us once again to watch the King & Queen Buildings light up orange in... 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 »
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 »
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 »
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 »
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 »
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 »
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 In PART 2 of the June “Feeling Fit” sessions, Frank Hanley will review and discuss exercises presented in PART 1 and demonstrate additional breathwork exercises to promote nose breathing and help strengthen... 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 »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month's Wellness hour features In Home Preferred, an innovative company run and managed by two Occupational Therapists who are Certified Aging in Place Specialists (CAPS). Hailey Conway, OTR,OTD,MS, CAPS and Sam Koelmel, OTR, OTD, MS, CAPS are the owners... Read More »
In this episode of FSHD Straight Talk, host Tim Hollenback talks with George Pollock, longtime member of the FSHD Society Board of Directors and a powerful advocate FSHD treatments. Join Tim and George for a conversation about the healing power of movement and to hear more about George’s passion for endurance athletics and upcoming participation... Read More »
First Wednesday of every month* 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT *Note we have changed the date to July 10 due to the July 4 holiday. Our July topic will be: How to manage when our assistive devices cannot get us into a building, how to... 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 In PART 3 of the “Feeling Fit” Breathing and Breathwork sessions, Frank Hanley will review and discuss exercises presented in the first two workshops, and demonstrate additional breathwork exercises to improve breathing... 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 »
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT This month, we invite everyone in the Young Adults community to join a conversation about how we build our community. How can this group support you with issues that are priorities in your life? What can we all work on... Read More »
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT This year's FSHD Connect, held on June 15-16, had activities and breakouts dedicated to pediatric and early-onset FSHD. Ally Roets and Debbie Eggleston will share what happened, what was learned, and discuss how our community will follow up. Join us... 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 »
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 »
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 »
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 »
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 Our featured presenter, Andrea Jaworek, PT, is passionate about aquatic exercise for people with neuromuscular conditions. Andrea will be presenting on aquatic exercise, discussing the benefits and latest research, the aquatic precautions/contraindications,... 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 »
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 »
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 celebrate our amazing Team Captains and Walk Leaders for all of the incredible work that they do. We’ll provide a few tips and tricks for... 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 »
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 We'll be discussing a variety of topics that have been raised recently: The types of providers we use to take care of our unique needs Managing fatigue How to maintain a sense of humor when... 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 »
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 Physical therapy and fitness training can both be beneficial to individuals with FSHD. Do you know the difference? When is PT called for? When does fitness training make sense? Join us to... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 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 »
Meet Mary Beth McCabe, the passionate Captain of Team McCabe and the NJ Shore Walk & Roll Leader. As host Tim Hollenbeck drums up support for the 2024 Walk & Roll season, hear how Mary Beth got involved and learned to host a successful fundraiser. Mary Beth is a hoot, a holler, and a half.... 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 »
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 »
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 »
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT We're excited to learn that Avidity will begin recruiting for Cohort C of its clinical trial this fall, and Cohort D sometime in early 2025. So it's timely to learn about how to become "trial ready" at the individual level.... 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 »
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Using real FSHD patient food records, we will explore the journey to better nutrition for FSHD and discuss the dietary choices that we make each day. Selina Lai, our Pacific Northwest Chapter director, has a registered dietitian credential and has... 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 Jhana Wilson, PT Physical therapy and exercise are important if you have FSHD, but making regular trips to a physical therapist can be challenging if you have mobility or transportation challenges. Join... 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 »
In this episode, host Tim Hollenback talks with Dan Wilson, a retired respiratory therapist and NASCAR enthusiast. In addition to discussing resources for home safety and building support networks to help with FSHD’s relentless progression, Dan discusses his hope to build an FSHD community in the Indianapolis area. FSHers of Indiana, if you’re listening, reach... 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 »
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 »
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 »
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 »
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 This month, we will talk about the challenges of making and keeping friends, in light of our many mobility challenges and potential location changes AND how to cope with the jealousy that may creep up... 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 all ages living with early-onset FSHD and build a community where we can share our experiences and support one another. It will be a space... Read More »
2024 Sacramento Walk & Roll to Cure FSHD Saturday, September 7, 2024 Registration opens at 9:00am, the Walk starts at 10:00am California State Capitol: 1315 10th St, Sacramento, CA 95814 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... Read More »
2024 Northeast Florida Walk & Roll to Cure FSHD Saturday, September 7, 2024 Check-in begins at 8:30am, walk begins at 9:00am Jacksonville Zoo & Gardens 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... Read More »
2024 Alberta Walk & Roll to Cure FSHD Saturday, September 7, 2024 9:00am at the Riverwalk Plaza, Calgary AB Join us for the second annual Alberta Walk & Roll to Cure FSHD. Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers... Read More »
2024 Colorado Walk & Roll to Cure FSHD Sunday, September 8, 2024 Check In begins at 8:00am and the Walk begins promptly at 9:00am Phillip S. Miller Park - Amphitheater, Castle Rock, CO Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who... 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 »
Join host Tim Hollenback and guest Brittany Lauro for this honest conversation about love, relationships, and FSHD. A Team Captain and volunteer for the Sacramento Walk & Roll, Brittany is a world traveler who turned to photography as FSHD affected her ability to walk and hike. In addition to discussing the importance of spousal support,... 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 Chris Haven Chris Haven, from the Pacific Northwest chapter, will share her experiences working out with Alex Walker, a personal trainer and strength coach. She will share a video and discuss her... 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 »
2024 Columbus Walk & Roll to Cure FSHD Saturday, September 14, 2024, 10:00am at Coffmann Park Pavilion 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 »
2024 Utah/Intermountain Walk & Roll to Cure FSHD Saturday, September 14, 2024, 3:00-5:00pm Canyon Rim Park - East Pavilion, Millcreek, Utah 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... Read More »
2024 Ontario Walk & Roll to Cure FSHD Saturday, September 14, 2024, 9:00am Lake Aquitaine Park, Mississauga, ON 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.... Read More »
2024 Pacific Northwest Walk & Roll to Cure FSHD Saturday, September 14, 2024, 9:00am Owen Beach Pavilion, Tacoma, WA 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... Read More »
2024 Idaho/Intermountain Walk & Roll to Cure FSHD Saturday, September 14, 2024, 10:00am Canyon Rim Park – East Pavilion, Millcreek, Utah 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... Read More »
2024 Kansas City Walk & Roll to Cure FSHD Saturday, September 14, 2024 Check-in begins at 10:00am, walk begins at 11:00am Location: Shawnee Mission Park, Shelter 5 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... Read More »
2024 StL Walk & Roll to Cure FSHD Saturday, September 14, 2024 Memorial Park * Pavillion 1, 8600 Strassner Dr, Brentwood, MO 63144 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... Read More »
2024 British Columbia Walk & Roll to Cure FSHD Date and Time TBD 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 there, you can share... Read More »
2024 East Tennessee Walk & Roll to Cure FSHD Details TBD 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 there, you can share your story on social... Read More »
Bay Area Walk & Roll to Cure FSHD Sunday, September 15, 2024 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 there, you can share your... 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 »
