Chicagoland Chapter Meeting Saturday, May 22nd, 10am – 12pm CT Via Zoom: https://us02web.zoom.us/j/89875341910?pwd=WklkazZHQ2djck9MY3FPdzJuWDluUT09 It’s been a while! Please join us for a “regroup” meeting of the Chicagoland Chapter. We will host this meeting virtually, with hopes to gather together in person again soon. This will be an informal meeting, so come as you are! We... Read More »
Sunday, May 23rd, 2-4pm CT Zoom: https://us02web.zoom.us/j/81596450646?pwd=bnhSV2RmSzRpc1pUdDQ0V3FIMjlZUT09 Please join us for the next virtual gathering of the CenTex Chapter! The subject of this meeting is Adaptations: How do you do things differently to adapt to muscle weakness? Do you hold your ukulele differently now? Use barbeque tongs to get your laundry out of the dryer?... 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 »
Saturday, May 29, 2021 12:00pm Eastern Time JOIN THE ZOOM MEETING HERE Please mark your calendars for a joint meeting of the Tampa and Southwest Florida chapters. We look forward to getting our groups together to connect, share resources, and support each other! We also have a special guest speaker: We will be joined... Read More »
1:00 pm ET | 12:00 pm CT | 11:00 am MT | 10:00 am PT Kate Eichinger, DPT, and Johanna Hamel, MD. Presented by Johanna Hamel, MD, and Kate Eichinger, DPT, from the University of Rochester Medical School. When doctors diagnose individuals with a progressive condition like FSH muscular dystrophy (FSHD), they’re often asked, What... Read More »
YOU'RE INVITED to the first New England Connections meeting, Thursday June 3rd at 7pm ET. This meeting will be held virtually. This will be a casual, introductory meeting where we can start to get to know our FSHD family across our region! There is no set topic, and everyone is encouraged to participate in the... Read More »
Bay Area Virtual Chapter Meeting Sunday, June 6, 2021 1:00pm-3:00pm Pacific Time Please join us Virtually LOG IN HERE Please join us for the next virtual gathering of the Bay Area Chapter, on Sunday, June 6th, 1pm PT! This will be an informal meeting, and everyone is welcome to share updates, ask questions, and bring your... Read More »
Western PA Meeting Tuesday, June 8, 2021 6:00pm Eastern Time Join Us Virtually Here Have a question about the genetics behind FSHD? Curious about the state of research in the FSHD field? Please join us on Tuesday, June 8th for a Q&A meeting with the FSHD Society’s Chief Science Officer, Dr. Jamshid Arjomand! Dr. Arjomand will... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Our guest this month is our very own Jamshid Arjomand, PhD, chief science officer. He'll update you about the latest research and drug development advances (that he's allowed to talk about). If you have questions about FSHD research, now's your... Read More »
Virtual conference Meet the outstanding clinicians and researchers at the University of Florida Gainesville, one of the newest members of the FSHD Clinical Trial Research Network. Get answers to your questions about your health, genetic counseling and testing, physical and occupational therapy, and much more. Learn about cutting-edge research at UF as well as promising... Read More »
NC Virtual Chapter Meeting RESCHEDULED: PLEASE NOTE NEW DATE & TIME!! Saturday, June 12th, 4pm ET | 3pm CT | 2pm MT | 1Pm PT Via Zoom: https://us02web.zoom.us/j/88629883230?pwd=ekd4K3hlZTFPbkNYR3lnd1c2WHZXZz09 Please join us for the next virtual gathering of the North Carolina Chapter, on Saturday, June 12th, 4pm ET! This will be an informal meeting, and everyone... Read More »
Sunday June 13, 2021 12:00pm - 3:00pm MT Central Park East Picnic Shelter: 9196 M.L.K. Jr Blvd, Denver, CO 80238 Please join us on June 13th for a Luau/Hawaiian BBQ as we re-Connect as a Colorado Chapter! --> Facilities are 100% accessible and permanent restrooms are on site. --> We will provide lunch, drinks and lawn... Read More »
This is our monthly Zoom meeting on Wellness, held on the second Monday of each month at 5:00-6:00 pm ET (if Monday is a national holiday, the meeting will be held on Tuesday). This month we will talk about transitions, which are an inevitable fact of life for anyone living with a progressive condition like... Read More »
This is our monthly Zoom meeting on Wellness, held on the second Monday of each month at 5:00-6:00 pm ET (if Monday is a national holiday, the meeting will be held on Tuesday). The Wellness Hour is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers,... Read More »
NH Virtual support group meeting Tuesday, June 15th, 6pm ET Zoom: https://us02web.zoom.us/j/87429809026?pwd=TGtieXVCRHJMdXVZbldaVHZyUjQ1Zz09 You’re invited to a virtual support group meeting for our members in NH! This will be an informal gathering, where we will have a chance to get to know our neighbors, and hopefully meet some new ones. We look forward to “seeing” you... Read More »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT With Tahseen Mozaffar, MD, chair of neurology at the University of California Irvine. Learn about clinical trials, the scientific process by which researchers determine whether a new therapy is safe, works biologically as expected, and, most importantly, can improve outcomes... Read More »
Utah Re: Connect Friday, June 18, 202 Canyon Rim Park East Pavilion, 3100 S Grace St, Millcreek, UT 84106 6:00pm-8:30pm MT Please join us for a Family Celebration/Picnic! This will be a great opportunity to Re:Connect and ramp-up for the Walk & Roll. Dinner will be catered by a food truck. We will have live music, lawn... Read More »
The Pacific Northwest Chapter is inviting you to their Sip & Share Virtual Art Show Saturday, June 19th 3:00-4:30 Pacific/4:00-5:30 Mountain/5:00-6:30 Central/6:00-7:30 Eastern Two virtual venues! - Mixology with Susie - Share & Show Art with Selina If you have art to share, please submit it HERE. Also please check out Mixology with Susie. She... Read More »
Every June 20th, people around the world join in activities to raise awareness for Facioscapulohumeral muscular dystrophy (FSHD) through World FSHD Day. How to get involved The Orange Slice Selfies campaign is our signature social media event to recognize World FSHD Day. Supporters post a photo of themselves to social media using an orange slice... Read More »
Saturday, June 20, 2021 Grub Kitchen and Bar 1110 Hammond Drive, Suite 35 Sandy Springs, GA 30328 Please join us once again to watch the King & Queen Buildings light up orange in honor of World FSHD Day! This year, we plan to meet up at Grub Kitchen & Bar, located at Perimeter Place Town Center,... Read More »
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 advances in FSHD... Read More »
4:00 PM ET | 3:00 PM CT | 2:00 PM MT | 1:00 PM PT The team from Fulcrum Therapeutics will be sharing the data from its Phase 2b clinical trial of Losmapimod, a treatment for FSH muscular dystrophy that is intended to stop the expression of the DUX4 gene and slow the progression of... Read More »
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 advances in FSHD... Read More »
Tuesday, June 29th, 6pm ET | 5pm CT | 4pm MT | 3pm PT Zoom: https://us02web.zoom.us/j/83158085309?pwd=dExxamhESnNzc29qR3RyT3JELzNkZz09 Please join us in celebrating the launch of the Virginia Chapter! We are thrilled to see this new chapter take shape. This effort is being led by two amazing volunteer leaders: Jodie Howell is a certified clinical research nurse... Read More »
8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT We'll be discussing the recent Fulcrum clinical trial results with the FSHD Society's June Kinoshita, director of research and patient engagement. What do these results mean, and how are you and your loved ones with FSHD processing the information? This monthly... Read More »
Thursday, July 1st, 7pm ET | 6pm CT | 5pm MT | 4pm PT Zoom: https://us02web.zoom.us/j/81914065823?pwd=cVc3RFZYMS8zV25BckRsOTc3dEh3Zz09 Please join us for the official launch meeting for the Drum & Roll fundraiser on Thursday, July 1st, at 7pm ET!! We plan to debut and demo our fundraising software, and give our group some insider tips and industry... Read More »
Northeast Florida Virtual Chapter Launch! Saturday, July 10th, 1pm ET | 12pm CT | 11am MT | 10am PT Zoom: https://us02web.zoom.us/j/86413001263?pwd=ZEFwRzBSb2NNZ3RaTC9WcERtcXdHUT09 We hope you will be able to join us for the official launch of the Northeast Florida Chapter! Our first meeting will be held virtually, with hopes to gather together in person soon. This... Read More »
Announcing the First Annual Idaho Talent Fest! July 10, 2021 We are proud to host the first annual Idaho Talent Fest to Cure FSH Muscular Dystrophy on July 10th. This competition will not only spotlight and celebrate many talented individuals, but will also raise funds and awareness for those suffering from FSH Muscular Dystrophy. Don't... Read More »
This month, we'll be discussing the recent Fulcrum clinical trial results with the FSHD Society's June Kinoshita, director of research and patient engagement. For many of us, this news is top of mind, so we want to provide the space to discuss the study and share how we are feeling and processing the information. Our... Read More »
New England Wellstone Update meeting, Tuesday July 13th at 5pm ET. We will be joined by Dr. Lawrence Hayward of the UMass Wellstone Center. He will provide research updates from the lab, and also summarize the news presented at the June 2021 FSHD Society International Research Congress. There will be plenty of time for Q&A,... Read More »
We hope you'll join us for the upcoming South Carolina Chapter virtual meeting! 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 the meeting at THIS LINK! I... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT This month's radio show guest is Heloise Hoffmann, who is not only the director of our Southwest Florida chapter and author of a new research paper on sleep and FSHD, but she is also a member of the team of... Read More »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT We’ve all heard how important a well-tailored exercise program is for people with FSH muscular dystrophy. This is easier said than done, especially if you have difficulty standing up or worry about falling during exercise. In today’s webinar, Dr. Nikia... Read More »
Pacific Northwest Re: Connect Pacific Bonzai Museum 2515 S 336th St, Federal Way, WA 98003 Sunday, July 18, 2021 1:30 pm - 4:00 pm PT Join us in the courtyard of the Pacific Bonzai Museum for a chance to reconnect with old friends and make some new ones. Light refreshments served, great conversation, and a... Read More »
Saturday July 24th 10a-11:30a ET Time: Jul 24, 2021 10:00 AM Eastern Time (US and Canada) Join from your computer or tablet: https://us02web.zoom.us/j/88086370976?pwd=Qkp2amJTUkhzWVpUVVF6UXA3a1Z4Zz09 Meeting ID: 880 8637 0976, Passcode: 191212 Or by phone: 646-558-8656, Meeting ID: 880 8637 0976 Please join us for guest speaker: Dr. Hanns Lochmuller, Professor of Neurology at the University... Read More »
Connecticut Connections _______ Saturday, July 24, 2021 12:00pm-4:30pm Riverview Waterfront Cookout 177 Roosevelt Drive, Seymour, CT 06483 www.riverviewwaterfront.com The Connecticut Connections group will be hosting a picnic to celebrate everything we’ve accomplished in the last year. We’re so excited to see everyone in person again! Please note: this is an outdoor venue. Please RSVP by... Read More »
Please join the CenTex, South Carolina, and Dallas chapters in welcoming guest speaker Dr. Jamshid Arjomand, FSHD Society's Chief Science Officer! Tuesday, July 27th, 3pm PT | 4pm MT | 5pm CT | 6pm ET Zoom: https://us02web.zoom.us/j/83400800261?pwd=L2VGZzlzdEtJbHA4WEhjV2dDVk9OZz09 Have a question about the genetics behind FSHD? Curious about the state of research in the FSHD field?... Read More »
Please join us via Zoom! We hope you can join us for the next meeting of the new Virginia Chapter! Our goal is to meet monthly, to get to know each other and support one another across the state. Our meetings are informal, and we would love to hear from you about what you’d like... 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. This month, we have... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us for our monthly Zoom meeting on Wellness, held on the second Monday of each month at 5:00-6:00 pm ET (if Monday is a national holiday, the meeting will be held on Tuesday). Each month, we'll have a conversation... Read More »
THE LIVE COURSE HAS BEEN COMPLETED. THE RECORDED COURSE WILL BE AVAILABLE SOON AS A CME-ACCREDITED ONLINE COURSE. The FSHD Society is offering an online CME-accredited masterclass on facioscapulohumeral muscular dystrophy (FSHD). This course is of interest to any physician and allied health professional who sees adult and pediatric neuromuscular patients. We’d appreciate it if... Read More »
ArkLaTex Area August 12, 2021 6:00pm CT Join us HERE Thanks to everyone who responded to Jeff Anderson about getting a local group together here. Please join us for our initial “Meet-and-Greet” - - Thursday August 12th at 6pm CT! So, come and meet your neighbors! We are hoping to get an official FSHD Society... Read More »
Team Captain Rally | Saturday, August 14th 12:00pm - 1:00pm ET/11:00 - 12:00pm CT/10:00am - 11:00am MT/9:00am - 10:00am PT We're bringing together team captains from across the US and Canada, via Zoom, so that we can celebrate and honor our team captains. We know that captains put in a lot of extra time and effort to... Read More »
Dakotas Chapter Meeting Sunday, August 15, 2021 Brandenburg Crew Real Estate Team Office 3369 45th Street S, Fargo, ND 58104 1:00pm CT Please join us as we get together for our first in-person meeting as a new FSHD Society chapter. We are participating in this year’s Walk & Roll to Cure FSHD and I’d love... Read More »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT In this presentation, Heloise Hoffmann will share her work focusing on understanding the relationship between FSHD, sleep, and pain. Sleep is essential, but it could be affected by FSHD. To confirm this link, Heloise conducted a survey of FSHD Society... Read More »
The FSHD Society is happy to support the UPIN FAMILY Day at the Zoo! August 21st at 10:00am As long-time partners and supporters of the Utah Program for Inherited Neuromuscular Disorders at the University of Utah (UPIN), we are excited to announce their upcoming event. UPIN has decided to replace their traditional conference model with... Read More »
Virginia Chapter virtual meeting, with Dr. Nicholas Johnson Tuesday, August 24th, 2021 6pm ET | 5pm CT | 4pm MT | 3pm PT Via Zoom: https://us02web.zoom.us/j/85293744362?pwd=ZG9rTnB2MmIrTjR5YU5BK2pna01jUT09 Please join us for the next meeting of the Virginia Chapter! We will be joined by Dr. Nicholas Johnson of Virginia Commonwealth University. He will provide updates on the... Read More »
SORRY FOR THE LATE NOTICE, EVENTS HAVE BEEN CANCELLED FOR TODAY! 1:15pm – 2:15pm PT | August 27, 2021 10975 N. Torrey Pines Rd. Suite 150 La Jolla, CA 92037 Thank you for being a part of the California Walk & Roll to Cure FSHD! It’s one state-wide effort, but there are multiple ways... Read More »
REGISTER NOW! Meet the outstanding clinicians and researchers at the University of Colorado, which joined the FSHD Clinical Trial Research Network last year. Dr. Matthew Wicklund 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 UC as well... Read More »
Saturday, August 28, 2021 12:00pm - 3:00pm Pacific We hope that all of our chapter members can join us for an informal, in-person, outdoor gathering on Saturday, August 28, from Noon to 3PM at Stanford. This gathering will have two purposes. One is to socialize in-person with each other with some refreshments for a little while. The... Read More »
Tuesday, August 31, 2021 6pm ET | 5pm CT | 4pm MT | 3pm PT Join Us Virtually Here Please join us for the next meeting of the New Hampshire virtual support group! We are planning a casual, conversational meeting – so please feel free to bring your questions, ideas, and whatever is on... 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. This month, June Kinoshita,... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Note: we have changed the date to September 7 for this month only. Tonight's featured guest is our National Walk & Roll Ambassador, actor Max Adler, who will be talking about his FSHD advocacy and this year's Walk & Roll.... Read More »
Please mark your calendars for the Virtual 2021 Chicago Walk & Roll! We will see you on Saturday, September 11, 2021 Please reach out to the Chapter Director, Dave Lukas, with any questions! He can be reached at ChicagoChapter@FSHDSociety.org. We look forward to seeing you on September 11th! *If you are comfortable we will be... Read More »
Please mark your calendars for the 2021 Columbus Walk & Roll to Cure FSHD! We will see you on Saturday, September 11, 2021 Please reach out to the Walk Leader, Sue Aumiller, with any questions! She can be reached at ColumbusChapter@FSHDSociety.org We look forward to seeing you on September 11th!
Please mark your calendars for the 2021 New England Walk & Roll! Join us for a lunch celebration on the Optum Roofdeck from 11:00am - 2:00pm Please reach out to the Walk Leader, Lexi Pappas, with any questions! She can be reached at alexipappas19@gmail.com. We look forward to seeing you on September 11th!
Please mark your calendars for the 2021 Colorado Walk & Roll! We will see you on Sunday, September 12, 2021 Please reach out to the Walk Leader, Anne Babcock, with any questions! She can be reached at COWnR@fshdsociety.org We look forward to seeing you on September 12th!
Please mark your calendars for the 2021 South Carolina Walk & Roll! We will see you on Saturday, September 12, 2021 Please reach out to the Chapter Director, Sam Miller, with any questions! He can be reached at SouthCarolinaChapter@FSHDSociety.org. We look forward to seeing you on September 12th!
Join us this month for a conversation on a subject that most people with FSHD are all too familiar with--fatigue. When does it hit you? How do you cope when it happens? How do you avoid it? And how does fatigue and the frustration and sadness of not having the energy to do your work... Read More »
Tuesday, September 14, 2021 11:30am - 2:00pm Join HERE Please join us as we re:Connect as a chapter on Tuesday, September 14th. We are planning on virtual for now, but as things open up, we will plan to add in-person! Hope you can join us! ~Amy Bekier, San Diego Chapter Director
Please mark your calendars for the 2021 NE Florida Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Christi Thissen, with any questions! She can be reached at NEFloridaChapter@FSHDSociety.org. We look forward to seeing you on September 18th!
Please mark your calendars for the Virtual 2021 East Tennessee Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Candice Norman, with any questions! She can be reached at EastTNChapter@FSHDSociety.org. We look forward to "seeing" you on September 18th!
Please mark your calendars for the 2021 Ontario Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Walk Leader, Steve Johnston, with any questions! He can be reached at OntarioWnR@FSHDSociety.org. We look forward to seeing you on September 18th!
Please mark your calendars for the 2021 Southwest Florida Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Heloise Hoffmann, with any questions! She can be reached at SWFloridaChapter@fshdsociety.org. We look forward to seeing you on September 18th!
Please mark your calendars for the 2021 International Walk & Roll! We will "see" you virtually on Saturday, September 18, 2021! Please reach out to the FSHD Society with any questions! FSHCommunity@FSHDSociety.org
Please mark your calendars for the 2021 Dakotas Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Bryan Domholt, with any questions! He can be reached at DakotasChapter@FSHDSociety.org We look forward to seeing you on September 18th!
Register Today! The Idaho Walk & Roll to Cure FSHD will take place on Saturday, September 18th. This event is for everyone who want sto make a difference for FSHD. There are many ways to participate! Register to Walk & Roll, fundraise, and come join us in person for pancakes, a bounce house, and connection... Read More »
Please mark your calendars for the 2021 St. Louis Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Marsha Sverdrup, with any questions! She can be reached at StLouisChapter@FSHDSociety.org. We look forward to seeing you on September 18th!
Please mark your calendars for the 2021 Utah Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Allison Calder, with any questions! She can be reached at UtahChapter@FSHDSociety.org. We look forward to seeing you on September 18th!
Please mark your calendars for the VIRTUAL 2021 California Walk & Roll! We will "see" you on Saturday, September 18, 2021 Please reach out to the Chapter Directors, Amy Bekier or Sue Drescher, with any questions! They can be reached at CAWnR@FSHDSociety.org. We look forward to "seeing" you on September 18th!
Please mark your calendars for the Virtual 2021 North Carolina Walk & Roll! We will "see" you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Meredith Huml, with any questions! She can be reached at NCChapter@FSHDSociety.org. We look forward to "seeing" you on September 18th!
Please mark your calendars for the Virtual 2021 Kansas City Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Kiley Higgs, with any questions! She can be reached at KansasCityChapter@FSHDSociety.org. We look forward to "seeing" you on September 18th!
Please mark your calendars for the Virtual 2021 Wisonsin City Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Tim Hollenback, with any questions! He can be reached at WisconsinChapter@FSHDSociety.org. We look forward to "seeing" you on September 18th!
Please mark your calendars for the 2021 Mid-Atlantic Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Ann Kolakowski, with any questions! She can be reached at MidAtlanticChapter@FSHDSociety.org. We look forward to seeing you on September 18th!
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 »
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