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 caregivers. Please respect our rules... Read More »
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! For the last meeting of the year, we will be celebrating how far we have come in 2021, and looking... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our topic this month is transitions in mobility. How do we know it’s time for an assistive device , or to switch from walker/cane to a motorized scooter or power chair? Also knowing it doesn’t... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Calling all care partners to join us this month for a conversation about helping your loved one with self-care. This can be delicate ground as your partner wants to preserve as much independence as possible while adapting to losses in physical... Read More »
We hope you will join us for the first Chapter meeting of the year! Reconnect with old friends, and meet some new folks from our region. This will be a casual meeting, but please feel free to bring your questions, thoughts and ideas about anything you’d like to see the group do in 2023! We’re... Read More »
Saturday, January 21, 2023 10:00-11:00am Eastern Time Join us via Zoom HERE We hope you will join us for the first Chapter meeting of the year! Reconnect with old friends, and meet some new folks from our region. This will be a casual meeting, but please feel free to bring your questions, thoughts and... Read More »
Chapter Meeting Sunday, January 22, 2023 1:00pm - 3:00pm Pacific Time Stanford University, Center for Academic Medicine, Grand Rounds Room 125 453 Quarry Road, Palo Alto, CA 94304 Our January 22, 2023 San Francisco Bay Area Chapter of the FSHD Society will be our Kick Off meeting for 2023. We look forward to seeing everyone... Read More »
Thursday, January 26th On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every 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 on all things... Read More »
12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Lonwabo Nene Join us for Q&A and discussion to follow up on Lonwabo Nene's physical rehab journey. Lonwabo is an active member within the disability awareness sector. He was diagnosed with FSHD at the young age of 15 and... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT What does your partner need from you or someone who helps with their care? This came up a few months ago, as we talked about how to decide when one needs professional help for their partner. This conversation leads to how... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Let’s learn from each other by sharing great tricks for shopping for clothing, getting makeup on, selecting shoes, how to do our hair, finding shoes that we want to …and can wear, And MORE! 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 Join physiotherapist Ulrike Uta of the Muscular Dystrophy Support Centre (MD Support Centre) in Coventry, UK, for today's session. Posture changes are normal for people living with FSHD. They are caused... Read More »
February 11, 2023 2:00pm – 4:30 pm Join us for this informative discussion about trials while sipping on a special pre-Valentine’s Day cocktail (N/A available) celebrating FSHD. Have you wondered about participating in a trial? Are you involved in a trial? Come join us to discuss the requirements and how you can prepare for... Read More »
Tuesday, February 14th On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. This month’s guest is Paul Ronson of Suffolk, England, a radio... Read More »
Learn about the FDA's recent fast track designation for Avidity's FSHD therapeutic here. 1:00 pm ET | noon CT | 11:00 am MT | 10:00 am PT | 18:00 GMT | 19:00 CET Avidity Biosciences has announced its plans to launch FORTITUDE, a Phase 1 / 2 clinical trial in FSHD of the novel compound... Read More »
Dear Friends, Please mark your calendars for a get-together in Tampa! We'll be meeting up at the True Food Kitchen, and if the weather is nice enough, we'll enjoy our time together out on the patio. This will be an informal gathering, with no particular agenda - but we'd love to hear your ideas or... Read More »
Thursday, February 23rd On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every 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 on all things FSHD.... Read More »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT | 18:00 UK | 19:00 CET Dr. Rita Perlingeiro Our webinar speaker is Dr. Rita Perlingeiro, Associate Professor of Medicine within the Lillehei Heart Institute at the University of Minnesota. Her primary research interests include understanding the molecular mechanisms controlling... Read More »
Saturday, February 25, 2023 10:00am ET Please join us for our first Chapter meeting of 2023! Grab a cup of coffee and join us for a casual discussion and Q&A with other members of our Ontario FSHD Community. Time to reconnect with old friends. meet new ones, and help us plan for the year. Hope... Read More »
March 9 - 26 Brew Quest – A Quest to Cure FSHD Fundraising for FSHD Society Discover new breweries around the Kearny Mesa/Miramar/Mira Mesa area while supporting our organization. At each brewery, make a qualifying purchase. Grab your map and ask the brewery to stamp it (each brewery has a unique stamp) with your qualifying... Read More »
Please join us for the first Alberta Chapter Meeting (virtual) on Sunday, March 12th at 10:00am MT via ZOOM! Please RSVP! Come and meet the Chapter Co-Directors, Jennie and Karen Camarta, and hear about our exciting plans to build the FSHD Community in Canada as we prepare for upcoming clinical trials. You can get the latest information about... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we will discuss a film, I Didn’t See You There. The idea is for you to watch it ahead of time and then join us on Zoom for the discussion. But if you don't have time to see... Read More »
Tuesday, March 14th On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. This month, our Community Profiles guest is entrepreneur and philanthropist... Read More »
Join us for the first official meeting as the new BC Chapter of the FSHD Society! We will meet virtually on Wednesday, March 15th 2023 at 7pm PT. Please RSVP to receive the zoom link. Come meet the Chapter Co-Directors, Priscilla Sharun and Cheryl Hooge. Our special guest for this meeting is Neil Camarta, the founder... Read More »
Come meet us! East TN Chapter Meeting Tuesday, March 21, 2023 5:00pm - 6:00pm Eastern Time Cedar Bluff Branch Library Cedar Bluff Meeting Room 9045 Cross Park Drive Knoxville, TN 37923 Dear friends, Please pencil us in for an in-person chapter meeting! We are so excited to get the group back together again to... Read More »
Thursday, March 23rd On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every 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 on all things FSHD.... Read More »
1:30 PM ET | 12:30 PM CT | 11:30 AM MT | 10:30 AM PT Nizar Saad, PhD Nizar Saad, PhD is an assistant professor at the Center for Gene Therapy at Nationwide Children’s Hospital. Dr. Saad worked on FSHD for several years in the laboratory of Scott Harper, PhD, and has been involved in... Read More »
Come meet us! Greater Philadelphia Chapter Meeting Saturday, March 25, 2023 10:00am - 12:00pm Eastern Time Wissahickon Valley Public Library 650 W Skippack Pike Blue Bell, PA 19422 Or via Zoom: Click here to join Dear friends, Please pencil us in for the next chapter meeting! This will be an informal gathering, and if you have... Read More »
Chapter Happy Hour Saturday, March 25, 2023 11:30am - 1:30pm CT Down South Kitchen & Bakery 6500 Cascades CT Ste. 100 The Colony, TX 75056 Dear Friends, Please mark your calendars for the NorTex Chapter Happy Hour in The Colony! We'll be meeting up at the Down South Kitchen & Bakery to eat, chat, and... Read More »
Chapter Happy Hour Sunday, March 26, 2023 3:30pm - 5:30pm CT Johnny Tamales Cantina 4647 East Sam Houston Pkwy S Pasadena, TX 77507 Please mark your calendars for the Houston-area FSHD Society Happy Hour in Pasadena! We'll be meeting up at Johnny Tamales Cantina to eat, drink and chat! This will be an informal gathering,... Read More »
Wednesday, March 29th, 2023 8pm ET | 7pm CT | 6pm MT | 5pm PT Via Zoom: Invite Link Invite Link https://us02web.zoom.us/j/3648329628?pwd=RjAxdHFCanU1RzNtQ0Fnek4zY1hidz09 Dear friends, It’s been such a long time since the New Hampshire group got together for a virtual chat! Whether or not you have joined this meeting in the past, we welcome all... Read More »
Chapter Happy Hour Saturday, April 1, 2023 3:30pm - 5:30pm CT District Kitchen & Cocktails (Anderson Lane Location) 7858 Shoal Creek Blvd, Ste. B Austin, TX 78757 Please mark your calendars for the CenTex Chapter Happy Hour in Austin! We'll be meeting up at the District Kitchen & Cocktails to eat, chat, and celebrate our Tacos... Read More »
Please JOIN US for our first Chapter meeting and social gathering of 2023, and to personally welcome our new Chapter Director, Kurt Spiegel! Sunday April 2nd, 2023: 3pm - 5pm Lariat Lodge Brewing Company 12684 W Indore Pl, Littleton, CO 80127 PLEASE RSVP by March 27 to ColoradoChapter@FSHDSociety.org Appetizers and drinks will be served! We will... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our topic this month is all about wheelchairs. How do you know when you need one? What psychological barriers do people face in making this transition? What benefits to people experience when they decide start using one? How do you... Read More »
Tuesday, April 11th 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 FSHD community living rich, full lives and diving into their experiences with FSHD. In this month's community profiles episode, Tim talks with Apex Frazier. Apex is... Read More »
Nevada Virtual Chapter Meeting 7:00 PM to 8:00 PM PT Join us on Zoom as we introduce Leslie Truman as our new Nevada Chapter Director! RSVP with the link below to let us know you’re coming. We hope to see you there!
Wednesday, April 12th, 2023 7pm ET | 6pm CT | 5pm MT | 4pm PT Via Zoom: https://us02web.zoom.us/j/83644567187?pwd=MnhSd0lPTVdUQlZYYzhhQ0VCdEI1UT09 Dear friends, I’d like to invite you join me for a lively Virtual Movie Night, hosted by the New England Chapter. We’ll be watching the Red Scooter Diaries short documentary together, which features the story of one... Read More »
Northeast Florida Chapter Brunch Saturday, April 22nd; 11am - 2pm Noura's Cafe, 1533 University Blvd W, Jacksonville FL 32217 Dear Friends, We hope you can join us for Saturday, April 22nd in Jacksonville, FL! We are excited to gather together in-person and meet new friends and neighbors you may not know you had! This will... Read More »
This event has been canceled.
For this All-Texas Chapter Meeting we will be joined by guest Debra Kerber from Easy Access Travel. She'll be giving us tips on accessible travel! RSVP below.
Thursday, April 27th 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 »
Idaho Talent Fest 2023 - Saturday, April 29th Join us April 29th at the Boise State University's Special Events Center for the 3rd Annual Idaho Talent Fest to Cure FSH Muscular Dystrophy presented by the FSHD Society Idaho Chapter, and Aesthetic Eye, PC. This competition will spotlight and celebrate many talented individuals, while raising funds and awareness for... Read More »
Hello BC Friends! Please join us for a virtual meeting on May 3rd, 2023 at 6pm PT! Our guest speaker will be Dr. Jamshid Arjomand, Chief Science Officer at the FSHD Society. He will be speaking about FSHD Clinical Trial readiness, and will give a current update on FSHD therapeutic development. Come with all of... Read More »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT In October 2022, Roche/Genentech shared with us plans to initiate a new trial called MANOEUVRE. This global Phase 2 clinical study will evaluate GYM329 (RO7204239), an investigational anti-myostatin antibody targeting muscle growth, in individuals living with FSHD (NCT05548556). We have invited... Read More »
9:00 a.m. US ET doors open | 10:00-4:00 p.m. US ET conference sessions The FSHD Society, in collaboration with the University of Rochester Medical Center, is hosting this year’s Rochester FSHD 360 conference. The University of Rochester is an epicenter for FSHD research in the U.S. in its role as the data hub for the... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT In the last few months, a raft of articles have been published on the topic of friendship. Some were about research on the topic, some were about new books that have just come out, and some were just reflections on... Read More »
Tuesday, May 9th 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 FSHD community living rich, full lives and diving into their experiences with FSHD. Family planning and adoption can be difficult subjects for anyone to navigate, especially... Read More »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Dr. Bakri Elshiekh We want to make sure that newcomers to the FSHD community have an opportunity to learn the basics and have their questions answered by a sympathetic expert. And those who have known of their diagnosis for a while... Read More »
Join us virtually as we launch our new Michigan Chapter! Come to meet our new Chapter Director, Cassie Harris, to get to know one another, and to find out about all the upcoming events in the area! Please RSVP to receive the zoom link: Learn more about Cassie, and sign up to receive all the... Read More »
Thursday, May 25th 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 »
Connecticut Connections Reunion Wednesday, May 31st, 2023 7pm ET | 6pm CT | 5pm MT | 4pm PT Via Zoom: https://us02web.zoom.us/j/3648329628?pwd=RjAxdHFCanU1RzNtQ0Fnek4zY1hidz09 Dear friends, Please join us for a virtual reunion of the Connecticut Connections group! It’s been a long time since the group has been together. I’d like to discuss ideas for the annual summer... Read More »
Join us for an informal breakfast/brunch gathering! Saturday, June 10th, 2023 - 11:00am ET Symposium Cafe: 3055 Dundas St W in Mississauga Dear Ontario friends, Come join your fellow Ontario FSHDers for a light breakfast/brunch/coffee, FSHD updates, and great conversation! We can catchup with old friends and welcome new ones! Space is limited, so PLEASE RSVP. See you there!... Read More »
Bay Area Chapter Meeting Sunday, June 11, 2023 1:00-3:00 pm PT Hoover Pavilion, Room 208 Stanford Campus Quarry Road, Palo Alto Let's meet together in-person (or Zoom) so that we can catch up with each other and hear about the latest research studies for FSHD. This event is free. Please RSVP, let us know how many will be attending,... Read More »
Tampa Chapter Gathering Sunday, June 11th, 4pm True Food Kitchen 3645 Midtown Dr, Tampa, FL 33607 Dear friends, Please come out and join us for another great get-together of the Tampa Chapter! We’ll be meeting back at True Food Kitchen. Please RSVP below by June 2nd so that we can make sure there’ll be... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Change of topic! Instead of Happy Hour, this month we will enjoy another Movie Night conversation. In the early 1970s, teenagers with disabilities faced a future shaped by isolation, discrimination and institutionalization. Camp Jened, a ramshackle camp “for the handicapped”... Read More »
Tuesday, June 13th 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 FSHD community living rich, full lives and diving into their experiences with FSHD. We’re thrilled to have Lauren “Lolo” Spencer as our Community Profiles guest this month!... Read More »
New York City/NJ - Area Chapter Tuesday, June 13, 2023 7:00pm ET via Zoom We hope you can join us for a virtual chapter meeting! We will be discussing our plans for 2023, clinical trial updates and will be learning about our virtual communities and how to get involved with both. Pencil us in... Read More »
SAVE THE DATE! 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. With the recent... Read More »
Celebrate World FSHD Day & Father’s Day at the ballpark with the PNW Chapter! Saturday, June 17, 2023 6:00pm Cheney Stadium, Tacoma Tacoma Rainiers vs. Albuquerque Isotopes After you register, Selina will mail your free tickets!
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!
Hello Friends! Please join us on June 20th, 2023 at 6pm as we celebrate World FSHD Day together! WHERE: Tap & Barrel - Convention Centre : 876-1055 Canada Place, Vancouver, BC V6C 0C3 WHY: It's WORLD FSHD DAY! The global day of awareness for FSHD. WHAT: Let's have some fun as we raise awareness. Appetizers and... Read More »
Join us for the Atlanta Chapter Watch Party as the King & Queen Buildings light up orange in honor of World FSHD Day! Tuesday, June 20, 2023 7:30pm ET El Azteca Perimeter 6115 Peachtree Dunwoody Road, Ste. 100, Sandy Springs, GA 30328
Western PA Chapter Meeting Wednesday, June 21 6:30 – 8:00pm ET Please join us for a virtual meeting of the Western PA Chapter to chat among ourselves, plan our family picnic scheduled for Saturday, August 5, discuss the launch of this year's Drum & Roll to Cure FSHD, learn about the latest developments at the... Read More »
Thursday, June 22nd 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 »
Idaho Chapter Meeting Thursday, June 22, 2023 6:30pm MT Louie's Pizza and Italian Restaurant at 2500 E Fairview Ave, Meridian, ID 83642 Join us for dinner! This will be an opportunity to spend an evening with good food, socializing and meeting FSHD Society staff members, Beth and Ashley. Event is free, but please RSVP.
Please join us on Saturday June 24th for a casual breakfast get-together, and for our first in-person meeting of the Alberta Chapter! WHAT: Let us treat you to breakfast, hear some important FSHD updates, and have great conversation. This is a family-friendly event so bring the whole family! WHEN: Saturday June 24th at 9am MT WHERE:... Read More »
Please join the Columbus Chapter and Nationwide Children's Hospital for an exciting day of research and community! Hear from Dr. Kevin Flanigan, Dr. Scott Harper, and Dr. Nizar Saad, then have the opportunity to actively participate in a study! In addition, hear from FSHD Society's Columbus Chapter Director Susan Aumiller, screen a short documentary, and... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Prepare your favorite alcoholic or non-alcoholic drink (you can download below a pdf of some cocktail recipes created by Susie Kanewske, director of the Chicagoland chapter formerly the Northwest Pacific chapter director). We want everyone to tell us what they... Read More »
Tuesday, July 11th For this month’s Community Profiles episode, we welcome Beverly Weurding, the visionary behind the Wheelchair Dancers Organization. Diagnosed with Limb Girdle Muscular Dystrophy at the age of 55, Beverly was navigating life as a new wheelchair user at a time when many contemplate retirement. Empowered by her physical therapist's support, she founded... Read More »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Epic Bio, a San Francisco based therapeutics company, is developing a gene therapy medicine specifically for FSHD patients. The new product, termed EPI-321, leverages a CRISPR-based platform to precisely find and fix the specific issue in the genome that causes FSHD.... Read More »
Thursday, July 27th The 2023 Walk & Roll to Cure FSHD is just around the corner, and Beth Johnston, the FSHD Society's Chief Community Engagement Officer, has all the details you need to know! Listen to hear about what the Walk & Roll is, how to get involved, and what’s new this year. Led entirely... Read More »
Heartland Chapter Happy Hour Friday, July 28, 2023 3:30 pm - 5:30 pm CT Boulevard Beer Hall - 2534 Madison Ave, Kansas City, MO 64108 Join us for an afternoon of fun and networking where you can connect with other members of the FSHD community. Drinks and light appetizers will be provided. Please RSVP below.
Thursday, August 3, 2023 7pm ET/6pm CT/5pm MT/4pm PT We'll bring together all our team captains via Zoom, to celebrate and honor your hard work, help you pack your toolkit for success, and have a little fun! Invite your Team Members, too!
Western PA Summer Picnic Saturday, August 5th, 2023 Adams Township Community Park, 698 Valencia Road, Mars, PA 16046 More details forthcoming! We hope you can join us again this year for the annual summer gathering of the Western PA Chapter! We will be returning to the fantastic Adams Township Community Park pavilion, for a BBQ... Read More »
Tuesday, August 8th This month, Tim has the pleasure of sitting down with Ryan Levinson, a world traveler and legend in the FSHD Community. Ryan's remarkable story makes this an episode that you won't want to miss! Diagnosed with FSHD as a teenager, Ryan's unwavering determination has never allowed his diagnosis to stand in the... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT For many of us, communing with Nature is an important contributor to wellbeing, so we are looking forward to this month's discussion. FSHD Society member Paul Miller will be speaking about "Bringing the beauty of birds into our daily lives."... Read More »
Mountain State Chapter Meeting Tuesday, August 15, 2023 5:30 pm - 6:30 pm PT | 6:30 pm - 7:30 pm MT Join us for a special chapter meeting for all Mountain state chapters (Colorado, Idaho, Utah, and Nevada) where the FSHD Society's Chief Science Officer, Dr. Jamshid Arjomand, will provide attendees with an overview of current... Read More »
DATE: Saturday, August 19, 2023 TIME: 5:00 pm - 7:00 pm PT WHERE: Mimi's Cafe, 2029 Alta Arden Expy, Sacramento, CA 95825 Join us for an in-person get-together where you will have the chance to meet and connect with other members of the community, hear from FSHD Society staff about upcoming events, and learn about new and exciting updates.... Read More »
CenTex Virtual Chapter Meeting Monday, August 21, 2023 7:00pm – 8:00pm CT Join us as we chat about the upcoming Walk & Roll to Cure FSHD and the FSHD 360!
Thursday, August 24th This month, Max Adler, a long-time friend of the FSHD Society, sits down with Tim to talk about the LA Walk & Roll. We can't wait to hear about the exciting plans for this event: Max has a supporting role in Good Bad Things, and the film's star Danny Kurtzman and director... Read More »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Megan McNiff Our speaker is Megan McNiff, a research associate from the John Walton Muscular Dystrophy Research Centre, Newcastle University, UK. She will be presenting the results from the FSHD European Patient Survey. The survey received over 1,000 responses from 26... Read More »
San Diego Virtual Chapter Meeting Thursday, August 24, 2023 6:00-7:00 pm PT Register below for our upcoming Walk n Roll Committee meeting. By this date you should be signed up online as a Walker or Team Captain HERE and have invited your friends and family to register/donate. It's easy to do. Once you're registered click the... Read More »
Connecticut Chapter Annual Luncheon Saturday, August 26, 2023 12:00pm – 2:00pm ET On the Border Mexican Grill & Cantina 1519 Silas Deane Highway Rocky Hill, CT 06067 Join us to meet new people, reconnect, and celebrate!
British Columbia Walk & Roll Celebration: Tuesday September 5th, 6pm (check-in starts at 5:30pm) The Pint Public House, 455 Abbott Street, Vancouver, BC 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 »
Alberta Walk & Roll Saturday, September 9, 2023 Registration at 8:30 a.m. TENTATIVE - RiverWalk Plaza: 618 Confluence Way SE Calgary AB T2G 0G1 Canada 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 »
Colorado Walk & Roll Sunday, September 10, 2023 Registration & Check-in 8am Philip 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 registers will be given a free participant page and access to a... Read More »
Pacific Northwest Walk & Roll Sunday, September 10, 2023 12:00 PM Cockrell Cider, 6613 114th Ave Ct E, Puyallup, WA. 98372 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 »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT September is National Fall Prevention month . Who better to talk about fall prevention than people who are prone to falling (yes that is us -FSHDers!!!). Join us as we share tips and tricks from many in our FSHD community... Read More »
Tuesday, September 12th Jenny and Tony Teel This month, Tim talks with guests Jenny and Tony Teel! This dynamic married couple runs a popular YouTube channel where they share valuable information and provide encouragement within the context of their interabled relationship. Tony, who lives with FSHD, has led them on a remarkable journey of discovering... Read More »
Arizona Walk & Roll Saturday, September 16, 2023 • 7:30 am Scottsdale, AZ 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 »
