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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 […]
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 […]
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 see you there! At meeting time, please click this link to […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Fatigue is one of the biggest challenges we face, and many of us have come up with strategies to manage fatigue. Let's share! This is our mutual support and social group for women of all […]
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 […]
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 […]
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 […]
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 […]
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 […]
7:00 pm ET | 6:00 pm CT | 5:00 pm MT | 4:00 pm PT FSHD Young Professionals is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers to connect, collaborate, and provide networking opportunities. Whether you’re just graduating, starting a […]
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 Mitch Wade This month, we're excited to welcome Mitch Wade, a fitness trainer from Portland, Oregon. Mitch is a legend in the FSHD community for his understanding of FSHD and results he […]
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Kiera Berggren Children with early-onset FSHD often struggle with speech and swallowing due to weak muscles around the mouth. Therapy can help! Our guest this month is Kiera Berggren, a research speech-language pathologist (SLP) in the Department of Neurology at […]
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 […]
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 […]
Dear friends, Welcome to the "Fourth Monday" 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 looking forward to catching up with everyone, and sharing our updates […]
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 meeting time, click this link to join […]
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 […]
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 Donna Russo has been promoting adaptive yoga and dance for many years and will be leading a session on Chair Yoga. Come in comfortable clothes and bring any supports you might need. […]
North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us 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 this link to join. Hope to see you there! ~Glen Denehie, North Texas Chapter Director
11:00 am ET | 10:00 am CT | 9:00 am MT | 8:00 am PT Join us for a virtual escape room! For this Saturday meeting, we’ll solve puzzles together in a virtual environment. We look forward to getting to know each other during this online adventure! FSHD Young Professionals is a social and support […]
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 […]
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 […]
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 see you there! At meeting time, please click this link to […]
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 what we call "Instrumental ADL’s (e.g. managing finances, housekeeping, shopping, yard needs, etc.). We all face these challenges and look forward to our discussion and sharing of solutions. This is […]
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 Mitch Wade and Bill Herzberg Last month we had the wonderful opportunity to work out with fitness trainer, Mitch Wade. This month, we bring you Bill Herzberg, a retired physician with FSHD […]
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! […]
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, […]
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 […]
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” […]
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! […]
7:00 pm ET | 6:00 pm CT | 5:00 pm MT | 4:00 pm PT FSHD Young Professionals is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers to connect, collaborate, and provide networking opportunities. Whether you’re just graduating, starting a […]
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 […]
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 […]
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 […]
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for a conversation with Sharon F. Terry, President and CEO of Genetic Alliance, an enterprise engaging individuals, families and communities to transform health. Genetic Alliance works to provide programs, products and tools for ordinary people to take charge […]
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 […]
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 […]
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 Frank Hanley will lead today's session with a special routine for the summer. We can't wait to find out what he has in store!. For people living with FSHD who are interested […]
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: […]
11:00 am ET | 10:00 am CT | 9:00 am MT | 8:00 am PT This Saturday's theme is "Improving Your Quality of Life with FSHD." We'll share information and habits that we’ve found to be helpful and discuss things we plan to try in the future to make living with FSHD a little easier. […]
Dear friends, Welcome to the "Fourth Monday" 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 looking forward to catching up with everyone, and sharing our updates […]
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 meeting time, click this link to join […]
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 […]
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 this link to join. Hope to see you […]
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 continue our robust discussion on instrumental activities of daily living (ADLs). We encourage all our Women on Wellness to share their great tips and tricks (and challenges) with preparing meals, housekeeping, […]
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 […]
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 […]
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 […]
7:00 pm ET | 6:00 pm CT | 5:00 pm MT | 4:00 pm PT This week, we are excited to welcome Jennifer Egert, PhD, as our guest speaker! Dr. Egert is a clinical psychologist with FSHD who offers mindfulness-based psychotherapy and workshops in Mindfulness Based Cognitive Therapy (MBCT) and mindful approaches to cope with […]
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 this month's guest, Ryan Levinson, who will be sharing some of his favorite "exercise cheats." Ryan is a legend in our community for his physical training regimen that has enabled him […]
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Jeffrey Statland, MD Join us for a conversation with Jeffrey Statland, Professor of Neurology at University of Kansas Medical Center in Kansas City, Kansas. He is the co-director of the FSHD Clinical Trial Research Network (CTRN) and his specific research […]
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. […]
11:00 am ET | 10:00 am CT | 9:00 am MT | 8:00 am PT FSHD Young Professionals is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers to connect, collaborate, and provide networking opportunities. Whether you’re just graduating, starting a […]
Dear friends, Welcome to the "Fourth Monday" 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 looking forward to catching up with everyone, and sharing our updates […]
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 meeting time, click this link to join […]
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 […]
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 this link to join. Hope to see you […]
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 […]
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 Rita Lynn (far right) with her family Join us for a session led by Rita Lynn Lawrence. After her diagnosis of FSHD, she retired from her photography career and became an advocate […]
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.
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 see you there! At meeting time, please click this link to […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Beth Babich is moderating this month's Women on Wellness around a topic she has been eager to discuss: Questions I wish I could ask. Do you have some too? This is your opportunity to unburden […]
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 […]
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 […]
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Jenny and Tony Teel Join us for an insightful discussion with special 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 […]
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 Rita Lynn (far right) with her family Join us for our second session led by Rita Lynn Lawrence. If you attended the first session, here's your chance to ask questions. After her […]
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." […]
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 […]
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Many of you have asked us to periodically update you on the advocacy initiatives the Early-Onset Chapter has been working on, so we set aside our August meeting to update the parents on the ongoing process in getting pediatrics included […]
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. […]
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!
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 meeting time, click this link to join […]
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 […]
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 Ruth Hereford from the Midlands Muscular Dystrophy Centre and a long-time champion of the benefits of exercise for FSHD will lead a discussion today on "sharing strategies from nutrition to transition." Our […]
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 […]
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 […]
11:00 am ET | 10:00 am CT | 9:00 am MT | 8:00 am PT Are you an artist with FSHD? Join us for a discussion about the joys and challenges of creating while living with FSHD. We welcome creative types and artists of all mediums as well as anyone just interested in the topic. […]
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!
Dear friends, Welcome to the "Fourth Monday" 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 looking forward to catching up with everyone, and sharing our updates […]
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 […]
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 this link to join. Hope to see you […]
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 […]
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 see you there! At meeting time, please click this link to […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Chaplain Deb Calhoun The Women on Wellness September 6th discussion will be on important documents we all need to consider. These are Advanced Directives, Living Will, Durable Power of Attorney for Healthcare and Finance. Our […]
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 […]
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 […]
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 […]
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 […]
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Julie Cohen Mark your calendar and join us for a discussion on genetic counseling and family planning with Julie Cohen, ScM, CGC. Julie Cohen is the Director of Genetic Counseling Services at the Kennedy Krieger Institute and is also part […]
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 […]
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 September marks the one-year anniversary of the “Feeling Fit” program. This month, Frank Hanley returns and will provide a brief recap of the many milestones the program reached this past year and […]
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 […]
Ontario Walk & Roll Saturday, September 16th 2023 9:00 am check in 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. […]
