Please mark your calendars for the 2021 Central Texas Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Ashley Bryan, with any questions! She can be reached at CenTexWnR@FSHDSociety.org We look forward to seeing you on September 18th!
Please mark your calendars for the 2021 Virtual Dallas Walk & Roll! We will "see" you on Saturday, September 18, 2021 Please reach out to us at FSHCommunity@FSHDSociety.org
Please mark your calendars for the 2021 Arizona Walk & Roll! We will see you on Saturday, September 18, 2021 Check-in 9am | Ceremonial Walk/Roll 10am at Silverlake Park, Tucson If you are in the Phoenix Area you are invited to join the Red Scooter Riders for a pop-up walk celebration. Get the details HERE... Read More »
Please mark your calendars for the 2021 Atlanta Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Jack Gerblick, with any questions! He can be reached at AtlantaChapter@FSHDSociety.org. We look forward to seeing you on September 18th!
Please mark your calendars for the Virtual 2021 Philadelphia Walk & Roll! Though our Walk & Roll will be virtual this year, we will gather for a celebratory Chapter meeting on Saturday, Sept. 18th at 10am at the Wissahickon Valley Public Library (650 Skippack Pike, Blue Bell PA 19422). There will also be a Zoom link available for those who cannot... Read More »
Please mark your calendars for the 2021 Minnesota Walk & Roll! We will see you on Sunday, September 19, 2021 Please reach out to the Chapter Director, Jacob Wise, with any questions! He can be reached at MinnesotaChapter@FSHDSociety.org. We look forward to seeing you on September 19th!
Please mark your calendars for the 2021 Pacific Northwest Walk & Roll! We will see you on Sunday, September 19, 2021 Please reach out to the Walk & Roll Leader, Selina Lai with any questions! She can be reached at PNWWnR@FSHDSociety.org. We look forward to seeing you on September 19th!
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Presented by Isaac and Ora Prilleltensky. Mattering consists of feeling valued and adding value, to ourselves and others. By feeling valued we mean being appreciated, respected, and recognized. By adding value we mean making a contribution and making a difference... Read More »
Thursday, September 23, 2021 6:00pm Eastern Time Please join us for a virtual meeting of the Western PA Chapter to help plan for our Drum & Roll to Cure FSH Muscular Dystrophy! The future is in important hands: OURS! Please help our chapter and the FSHD Society take steps today for a brighter tomorrow for... Read More »
Meet the dedicated clinicians and researchers at UCLA at this year's FSHD 360 Los Angeles conference. Dr. Perry Shieh and his team will answer your questions about your health, genetic counseling and testing, physical and occupational therapy, and much more. Learn about cutting-edge research at UCLA as well as promising advances in FSHD therapies from... Read More »
Saturday, September 25, 2021 3:00pm-5:00pm Eastern Time Please join us for the next virtual gathering of the North Carolina Chapter, this Saturday, September 25th, 3pm ET! This will be an informal meeting, and everyone is welcome to share updates, ask questions, and bring your ideas. We love having this time to catch up with friends... Read More »
The Early-onset FSHD Chapter is hosting a meeting for all families impacted by early-onset or infantile FSHD. September 27th 2:00 MST/PT, 3:00 MT, 4:00 CT, 5:00 ET Our special guest speaker will be Dr. Natalie Katz, U of Rochester. A more detailed agenda will be posted soon! Make plans to join us via Zoom for... 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 »
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 »
Join Us on Saturday, October 2, 2021 George Pollock Jr, Founder of the FSHD Cycling Team, is hosting the first annual "Targeting a Cure for FSHD" to raise awareness and funds for FSH Muscular Dystrophy (FSHD). This will be a great day to re-connect with friends - old and new! Join us to shoot, to... Read More »
Sunday, October 3, 1:00 p.m. West End-Elliott Overlook Park (Elmer Clark Pavilion) Marlow Street, Pittsburgh, PA 15205 Together we can ensure no one on this journey travels alone. The Western PA Chapter will have an in-person meeting and Celebration on October 3 at 1:00 p.m. at the West End-Elliott Overlook Park (Elmer Clark Pavilion), Marlow... 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 »
Please join us for our quarterly virtual chapter meeting! We welcome new friends, so please feel free to dial in from anywhere. We look forward to "seeing"/meeting you soon! -Kathy Senecal, Chapter Director JOIN THE MEETING HERE!
5:00 pm US ET | 4:00 pm US CT | 3:00 pm US MT | 2:00 pm US PT Use the World Clock time converter to figure out your local time Follow GenZ of FSHD on Instagram After launching “GenZ of FSHD,” a social media-based group for teens and young adults in the FSHD community,... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, FSHD Society member Donna Russo will start things off with a 15-minute chair yoga session. This will be a great way to get your body activated and start a conversation about self-care. Our monthly Zoom meeting on Wellness... Read More »
Please JOIN US for our Fall South Carolina Chapter meeting! Tuesday October 12th, 2021 - 8-9 PM Eastern Time Our gatherings are informal, and we welcome new friends! Please stay tuned for updates as we put our agenda together - and if there's a topic you want us to cover, please let us know. Join... Read More »
Tuesday, October 12 Ally Roets & her son Sam. 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT This month's guests are Ally Roets and her son, Sam Ray. Together with Kristin Zwickau, they are co-leading our early-onset FSHD chapter for families that have members who developed symptoms of... Read More »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT With Sanne Vincenten, MD, and Nicol Voermans, MD PhD, of Radboud University Medical Center, and Jacinda Sampson, MD PhD, of Stanford University Medical Center. Drs. Vincenten and Voermans recently co-wrote an article on FSHD genetics and reproductive counseling, together with... Read More »
Saturday, Oct. 23rd, 2021, 10am CT 11am ET | 10am CT | 9am MT | 8am PT Via Zoom: https://us02web.zoom.us/j/82661566456?pwd=VmhLTXRnNGRqYnkyd2dLRExEUTZaZz09 It’s been a while since we got together as a chapter, and we miss you all! With that in mind, we’ve scheduled our next virtual meeting – please mark your calendars for Saturday, Oct 23,... 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 »
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 »
10:00-3:00 pm ET Virginia Commonwealth University is one of the newer members of the FSHD Clinical Trial Research Network, but its director Nick Johnson, MD, has been a leader in the field going back to his time leading the CTRN group at the University of Utah. He and his superb team of clinicians and researchers... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This is our mutual support and social group for women of all ages who are living with FSHD. This month, we'll be discussing clothing and how to solve the challenges of finding garments that are... Read More »
Mid-Atlantic Virtual Chapter Meeting Saturday November 6, 2021 10:00am-11:00am ET We hope you will be able to join us for a very exciting virtual meeting with the Mid-Atlantic Chapter! We will be joined by our guest speaker, Dr. Doris Leung. She will share with us the details of her new position at KKI along with... Read More »
Please mark your calendars: The 2021 Western PA Drum & Roll to Cure FSHD has been scheduled! We hope to see you on Saturday, November 6th, 2021! Event information can be found here: https://p2p.onecause.com/drumandroll Please reach out to the Chapter Director, Mark Christman, with any questions! He can be reached at WesternPAChapter@fshdsociety.org We look forward... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Matt Beke, University of Florida Food is essential to our health and is also laden with a lot of emotional freight, both good and bad (especially as we head into holiday season!). This month, we've invited Matt Beke, a clinical... Read More »
Tuesday, November 9 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT This month's guests is our chief science officer, Jamshid Arjomand, PhD! He'll be sharing the latest and greatest in FSHD research, including news from the Clinical Trial Research Network investigators meeting that just happened last week in... Read More »
12:00 PM ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Jeffrey Statland, MD Our speaker this month is Jeffrey Statland, MD, co-director of the FSHD Clinical Trial Research Network and professor of neurology at the University of Kansas Medical Center. Dr. Statland has his finger on the pulse of all... Read More »
Please join us for "Magic for a Cure" for FSH Muscular Dystrophy on Thursday, November 18th at the Kolo Klub in Hoboken NJ! Celebrity Magician, John Stessel, will MC an amazing evening of fun and magic, all while raising awareness and critical funds for FSHD! For all event information, please click HERE Questions? Contact Beth... Read More »
Saturday, November 20, 2021 11:00am-12:30am ET Please join fellow patient Emily Caouette for an extended-length session as she shares her FSH journey. Learn how she's improved her pain from years of level 8-10 down to 1-3 over the span of just four months. She’ll discuss FSH-focused studies, beneficial vitamins and supplements, low inflammation diet, helpful resources, and disease... 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 »
Tim Hollenback, FSHD Radio host #GivingTuesday is a global generosity movement unleashing the power of people and organizations to transform their communities and the world. On Tuesday, November 30th, we will celebrate with an all-day Radiothon event with FSHD Radio. Our amazing host, Tim Hollenback, will hold four hour-long sessions live on Facebook. Tune in... Read More »
8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Matt Beke, University of Florida We’ve invited Matt Beke, a clinical dietician at the Fixel Center for Neurological Diseases at the University of Florida, to join us this evening to talk about food, health, and self-care. Matt is a Registered Dietitian... 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 Women on Wellness meeting will discuss menopause in women with FSHD. How has menopause affected your body and muscle functions? What are some tips and tricks for coping? This is our mutual support... Read More »
Saturday, Dec. 11th, 2021 1pm – 2:30pm ET Discovery Auditorium, Nationwide Children’s Hospital 700 Children’s Drive Columbus, OH 43205 Please join us for an exciting Columbus Chapter Meeting, held at the Discovery Auditorium at Nationwide Children’s Hospital! Dr. Scott Harper will be our primary speaker, updating our group on what’s going on in the field... Read More »
Sunday, December 12, 2021 1:00pm - 2:00pm PT Please join us as Dr. Bill Lewis provided information about participating in the research study he is heading up at UC Davis. Hope to "see" you there. Kent and Sue Drescher, Bay Area Chapter Directors
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us this month to learn about stress reduction through Mindfulness. Dr. Jennifer Egert will lead us through a brief introduction and exercise in Mindfulness. Then we'll break up into smaller conversation groups so everyone will have a chance to... Read More »
Tuesday, December 14, 2021 8:00pm Eastern/5:00pm Pacific Please join us for the December Early-Onset Parent Roundtable, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as possible. This month Ally will provide information to parents about the MOVE study and participating sites, and pass... Read More »
Tuesday, December 14 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT This month’s guests will be Sam Ray, a 15-year-old, in Tucson, AZ, who is living with Early-onset FSHD. Sam will talk with Tim about how his FSHD motivated him to explore exoskeleton technology, and fostered his love... Read More »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Bob Meier, CO Bob Meier, certified orthotist, is back to present on a topic that is not uncommon in people with FSHD: knee hyperextension. During walking, certain muscles are activated so that the human knee never even reaches full or... Read More »
4:00 PM ET | 3:00 PM CT | 2:00 PM MT | 1:00 PM PT This is the virtual meeting of the GenZ of FSHD group, for people with FSHD who were born after the mid-1990s (with some wiggle room). It is open to people from everywhere who are in this age group. Our purpose... 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 »
8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT As we close out the year, we'll gather to share companionship and conversation. What has the past year been like for you? How are you handling the holidays? What are you doing to take care of yourself? How can this group... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This is our mutual support and social group for women of all ages who are living with FSHD. The topic this month was suggested by a woman with FSHD who was planning to have a... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us this month to learn about what to think about when choosing a power scooter or wheelchair. We'll be joined by Ray Jordan, Cyndi Segroves, and Amy Bekier, all highly experienced in this topic. They've done their homework and... Read More »
Tuesday, January 11th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT 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... Read More »
Saturday, January 15, 2022 10:00am-11:30am PT Please join us for coffee hour for a casual meet up to plan future meetings and to check in with other chapter members! Hope to "see" you there! ~Selina Lai, Pacific Northwest Chapter Director
Tuesday, January 18th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as... 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! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join... Read More »
8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Jennifer Egert, PhD Join psychologist and mindfulness instructor Jennifer Egert, PhD, to learn about mindfulness meditation and how to apply it in your daily life to improve your mental state. This monthly meeting is for those of you who are providing... Read More »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Presented by Jos IJspeert, MSc, Radboud University Medical Center Jos IJspeert, Radboud University Medical Center Shoulder or scapular dyskinesia is one of the most common symptoms of FSHD. The muscles that normally stabilize the shoulder blade, or scapula, are weakened, and... Read More »
Thursday, January 27th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT 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,... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT At our meeting this month, we'll converse about navigating our challenges with activities of daily living. Share your tips and tricks, and how you find and ask for help when you need it. Women on... Read More »
SW Florida In-person Chapter Meeting Sunday, February 06, 2022 3:30pm ET Happy 2022! It’s been such a long time since we’ve been able to gather as a chapter. Let’s change that! You are invited to join us for a chance to reconnect with each other and celebrate all we have to look forward to this... Read More »
Tuesday, February 8th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT 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... Read More »
Wednesday, February 9, 2022 7:00pm-8:00pm EST Please join us for the first New England chapter meeting of 2022! We look forward to “seeing” everyone again soon. This meeting will be held virtually, so that as many of our group as possible can attend from the warmth & safety of their homes. Let’s start the new... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we thought we'd explore the topic of ableism--and in particular ableist concepts that all of us absorb unconsciously because ableism is so deeply embedded in our culture and language that many of us are unaware of them. Internalized... Read More »
Tuesday, February 15th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as... Read More »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Eva Chin, PhD With Eva Chin, PhD. Eva is Executive Director of Solve FSHD, a recently formed Canadian company that is focused on accelerating the development of treatments for FSHD. Eva is a Canadian-trained scientist who has had an international career... 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! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join... 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 »
Thursday, February 24th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT 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,... Read More »
Saturday, Feb. 26th 4pm ET | 3pm CT | 2pm MT | 1pm PT Please join us for the next virtual gathering of the North Carolina Chapter, this Saturday, February 26th, 4pm ET! This will be an informal meeting, and everyone is welcome to share updates, ask questions, and bring your ideas. We love... Read More »
Thank you for helping us spread awareness about FSH muscular dystrophy on Rare Disease Day! Rare Disease Day occurs every year on the last day of February. On February 28th, we hope you will share your story on your social media platforms and that the resources here help you do so. Thank you for helping us all raise... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT The March meeting of the Women on Wellness (WOW) will be a continuation of the full and robust topic of Activities of Daily Living (ADLs), including personal care needs. We will continue our conversation from... Read More »
Pacific Northwest Chapter Hybrid Meeting Saturday, March 5, 2022 12:00pm - 2:00pm Pacific Time 2210 7th St NW, Gig Harbor, WA Home of Selina, Russell & Stuart Lai Path to Personal Wellness - Tips from the Locals Please join us for our next Chapter meeting where we will hear tips from our local members! Guests... Read More »
Tuesday, March 8th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT 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... Read More »
Western PA Chapter Virtual Meeting Thursday, March 10, 2022 6:00 p.m. Eastern Time|5:00 Central Time|4:00 Mountain Time|3:00 Pacific Time Please join us for the first Western PA Chapter meeting of 2022! Jump on board via Zoom for a chance to reconnect with each other, explore the resources the FSHD Society makes available to support and... Read More »
All California Chapters Meeting March 13, 2022 2:00PM PT|3:00PM MT|4:00PM CT|5:00PM ETAs the world opens and spring arrives we all need to re-energize. We invite you to register for a Zoom San Diego, Bay Area and Los Angeles Chapter meeting with Kent Drescher. Kent is an FSHD patient and a graduate of the Fuller Graduate... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, Jane Earl will take us on a virtual tour of her home to show us how she has designed it for maximum accessibility as her FSHD has progressed. Her experiences have turned her into an advocate for universal... Read More »
Tuesday, March 15th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as... Read More »
10:00 am - 3:00 pm Pacific Time Registration now open! Our Bay Area chapter and Stanford University are co-hosting this year's Bay Area FSHD 360 conference. Stanford joined the FSHD Clinical Trial Research Network in 2020, but it has had an FSHD research center for many years prior under John Day, MD PhD, a leader... Read More »
3:00 PM ET 2:00 PM CT | 1:00 PM MT | 12:00 PM PT Get to know your fellow GenZers on March 20th at this fun gathering! We’ll play online social games and chat in a laid-back, supportive environment. We hope to see you there! Held every other month on the third Sunday at 3:00... 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! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join... Read More »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Please join FSHD Society and Fulcrum Therapeutics in a community webinar announcing REACH, the 1st Phase 3 clinical trial in FSHD. REACH will enroll ~230 patients at clinical sites in US, Canada and Europe beginning this spring. Information regarding trial design and activation... Read More »
Thursday, March 24th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT 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,... Read More »
Saturday, March 26th 4:00pm ET|3:00pm CT|2:00pm MT|1:00pm PT You are invited to join us for a virtual meeting of the East TN Chapter! We are looking forward to reconnecting with friends old & new. At our first meeting of 2022, we will share some exciting updates from the Society, and discuss how we’d like to... Read More »
CenTex Virtual Chapter Meeting Sunday, March 27, 2022 2:00PM Central Time Please join us as we welcome our guest speaker, Jodie Howell. She will discuss with us how to become clinical trial ready. There will be time for introductions and questions, so make sure to bring your questions to the meeting! We hope to “see”... 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 »
Saturday, April 2, 2022 10:00am ET Columbus Metropolitan Library - Dublin Branch (Meeting Room 1) 75 North Hight St. Dublin, OH 43017 Parking is located just behind the library Please join us for the next meeting of the Columbus Chapter! At this gathering, we are planning to discuss: Planning for 2022, the expectations of the... Read More »
Saturday, April 2nd, 11am CT Chicagoland Virtual Chapter Meeting Please join us virtually for the next meeting of the Chicagoland Chapter! We will have some new faces joining us this time around, and we hope to see many of you there as well. We will be discussing all the exciting news that has been coming... 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 topic is "Body Image, Promoting Positivity within a Potentially Challenging Topic." How we individually perceive our own Body Image, as we experience the changes imposed upon us by the FSHD disease process. Acknowledging... Read More »
Idaho Talent Fest 2022 - Saturday, April 9th The FSHD Society, Idaho Chapter, will be hosting the second annual Idaho Talent Fest to Cure FSH Muscular Dystrophy (FSHD). This competition will spotlight and celebrate many talented individuals, while raising funds and awareness for those suffering from FSH Muscular Dystrophy. Finalists will perform in front of... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we'll be discussing breathing issues, which affect many in our community. We'll be joined by Dan Wilson RRT, CPFT, AE-C, a respiratory therapist with the Indiana Joint Asthma Coalition (InJAC). Dan has FSHD himself. Also joining us is... Read More »
Tuesday, April 12th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT 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... Read More »
New England Virtual Chapter Meeting Wednesday, April 13th 7pm ET | 6pm CT | 5pm MT | 4pm PT Please join us for the next virtual meeting of the New England Chapter! We welcome friends old and new, from Maine, New Hampshire, Vermont, Massachusetts, Rhode Island, Connecticut…. And beyond!! For our April meeting, we will... Read More »
Tuesday, April 19th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as... Read More »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Kathy Mathews, Shelley Mockler, and Krista Kohl. Around 70-80 percent of individuals diagnosed with facioscapulohumeral muscular dystrophy report that pain is a significant part of their condition. There has been relatively little research or discussion in the medical literature about the... Read More »
Saturday, April 23 2022 11:00am ET | 10:00am CT | 9:00am MT | 8:00am PT Please join us as we watch the webinar recording featuring Eva Chin, the Executive Director for Solve FSHD - a recently formed Canadian company that is focused on accelerating the development of treatments for FSHD. We will follow the viewing... Read More »
April 23, 2022 11:00am Central Time 3247 47th Street S Fargo, ND 58104 Please join us for our first in-person gathering of the year! It’s been such a long time since we’ve been able to gather as a chapter. Join us for a chance to reconnect with each other, talk about our goals for the... Read More »
Minnesota In-Person Chapter Meeting Sunday, April 24, 2022 12:00PM Central Time Please join us for our first in-person event since the chapter launch! In this meeting we will discuss where we've been, where we're at, and where we're going (2025). We can't wait to see you there! Jacob Wise, Minnesota Chapter Director
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... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Join us this month to share stories about activities you and your loved ones with FSHD once enjoyed but find increasingly difficult - or impossible - to continue. It's okay to mourn. How do we overcome such losses? Have you discovered... Read More »
Thursday, April 28th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT 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,... Read More »
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