UPDATE: Our community’s health and well-being are our highest priority, and so due to the risks posed by COVID-19, particularly to people with FSHD, we have rescheduled the Voice of the Patient Forum for June 29, 2020, as an online meeting. Everyone who is currently registered will be automatically re-registering for the June 29 virtual... Read More »
Tuesday, June 30th, 2020 8:00pm-9:00pm Eastern https://us02web.zoom.us/j/81351746544 Please join us for the next South Carolina Chapter virtual meeting! We invite all members to come and share their thoughts, quarantine experiences, and questions. We hope to “see” you there! ~Frank Hanley, South Carolina Chapter Director, SouthCarolinaChapter@FSHDSociety.org
Tim Hollenback, FSHD Radio host 12:00 PM ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Join host Tim Hollenback on Facebook Live on the first Wednesday evening every month. During the hour-long program, you'll get to meet fascinating guests discussing a wide range of topics of interest to our community.... Read More »
The 2020 San Diego Walk & Roll to Cure FSHD has gone VIRTUAL! Sequester-at-home restrictions and public safety guidelines have us all in our homes. While we certainly hope we can all safely come put into the community again by July 11, that remains uncertain. So we have decided to transition our San Diego Walk &... Read More »
Pacific Northwest Virtual Chapter Meeting Saturday, July 11, 2020 10:30 am - 11:30 am PT JOIN THE ZOOM MEETING HERE This will be a tutorial on how to sign up for the Walk & Roll and create teams, and set up your pages! We look forward to "seeing" you on Saturday! We hope you can... Read More »
11:00am - 12:30pm Mountain Please join us on Saturday, July 11th for a virtual chapter meeting! Log into the meeting here: https://ucdenver.zoom.us/j/93149824739
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. Mark your calendar. Invite your friends to a listening party and chat with fellow Facebook listeners in the comments section. It’s a great community event! Whether you just need someone to... Read More »
Ora Prilleltensky (lower right) with her family. This webinar is scheduled for 1:00 PM ET | noon CT | 11:00 MT | 10:00 PT This month’s webinar is presented by Dr. Ora Prilleltensky, a psychologist by training whose research and approach to well-being in the face of chronic disability is informed by her personal experiences as an... Read More »
Please join us for the Idaho Chapter Launch on July 18th from 12:00pm-2:00pm We will have a meet and greet, lunch, and an FSHD Society 101 with insight into what is coming up including therapeutic treatment trials. Mark Stone, President and CEO of the FSHD Society, will be joining us to provide updates and answer... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. Mark your calendar. Invite your friends to a listening party and chat with fellow Facebook listeners in the comments section. It’s a great community event! Whether you just need someone to... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live on the first Wednesday evening every month. During the hour-long program, you’ll get to meet fascinating guests discussing a wide range of topics of interest to our community. Mark your calendar. Invite your friends... Read More »
10:00 PM ET | 9:00 PM CT | 8:00 PM MT | 7:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. During the hour-long program, you’ll get to meet fascinating guests discussing a wide range of topics of interest to our community. Mark your calendar. Invite your friends to a listening party... Read More »
Save the Date St. Louis Virtual Chapter Meeting Thursday, August 6, 2020 6:30 - 8:00pm CT JOIN THE ZOOM MEETING HERE Password: 669756 Sara Heineman, MSGC, LGC, a licensed genetic counselor and a genomic testing consultant from PekinElmer Genomics will be presenting information on their new genetic test for FSHD. The FSHD Society has partnered... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. Our guest this week is Jennifer Egert, Ph.D., a clinical psychologist with FSHD who offers mindfulness based psychotherapy and workshops in Mindfulness Based Cognitive Therapy (MBCT) and mindful approaches to cope... Read More »
Los Angeles Virtual Chapter Meeting Saturday, August 15, 2020 10:30am-11:30am Pacific Time Zone Please join us Virtually LOG IN HERE Password: 059647 This will be a great way to share resources, catch up and talk about the upcoming Walk & Roll on September 12th!
Bay Area Virtual Chapter Meeting Sunday, August 16, 2020 1pm-3pm Pacific Time Please join us Virtually LOG IN HERE Password: 091299 Please join us on Sunday, August 16th for a virtual meeting with the Bay Area Chapter! In addition to being a great opportunity to catch up and talk about the upcoming Walk & Roll in September... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. Our guests tonight are our favorite exercise mavens, Bill Herzberg and Mitch Wade. They'll be sharing their experiences with workouts that have improved Bill's strength, range of motion, and endurance. Mark... Read More »
Dr. Anthony Romeo NOTE CHANGE OF DATE. Join us for our webinar on scapular stabilization surgery at 1:00 pm ET | 12:00 pm CT | 11:00 am MT | 10:00 am PT. One of the classic symptoms of FSHD is "scapular winging." The muscles around the shoulder blade (scapula) weaken and allow the bone to... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. Tonight's guest is Dr. Anthony Romeo, a distinguished orthopedic surgeon who is one of the leading experts on surgery to stabilize the shoulder blade (scapula) in individuals with FSH muscular dystrophy.... Read More »
Pacific Northwest Virtual Chapter Meeting Saturday, August 29, 2020 12:00 pm - 1:00 pm Pacific Time JOIN THE ZOOM MEETING HERE Join us to talk about the PNW Walk & Roll for a Cure Updates and First Freedoms After COVID 19. We look forward to "seeing" you on Saturday! We hope you can join us!... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. This week, Beth Johnston and Leigh Reynolds are our guests, talking about the FSHD Society's biggest fundraising event of the year, the Walk & Roll to Cure FSHD on September 12.... Read More »
Kathy Senecal and Sarah Pashe invite you to come support, empower, share and network with the FSHD community. This is a monthly meeting that will take place on the first Thursday of each month via Zoom web conference. Patients, caregivers and family members welcome! JOIN US from your computer or tablet! If needed, passcode is:... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. Our guest tonight is Dr. Jen Egert, a psychologist living with FSHD, who will discuss strategies for maintaining peace of mind in these stressful times. Mark your calendar. Invite your friends... Read More »
9:30am - 11:30am Please join us for an all-chapter picnic breakfast in the park as we celebrate our new chapter and the Idaho Virtual Walk & Roll! Julius M. Kleiner Memorial Park 1900 N. Records Ave. Meridian, Idaho 83646 ~Hope you can join us for this gathering in the park. We'll have pancakes and plenty... Read More »
Please mark your calendars: The 2020 Arizona Walk & Roll to Cure FSHD has gone VIRTUAL! We will see you on Saturday, September 12, 2020 Please reach out to the Chapter Directors, Landon & Marie Morrell, with any questions! They can be reached at ArizonaChapter@FSHDSociety.org We look forward to "seeing" you on September 12th!
Please mark your calendars: The 2020 Atlanta Walk & Roll to Cure FSHD has gone VIRTUAL! We will see you on Saturday, September 12, 2020 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 12th!
Please mark your calendars: The 2020 Bay Area Walk & Roll to Cure FSHD has gone VIRTUAL! We will see you on Saturday, September 12, 2020 Please reach out to the Chapter Directors, Kent & Sue Drescher, with any questions! They can be reached at BayAreaChapter@FSHDSociety.org We look forward to "seeing" you on the 12th!
Please mark your calendars: The 2020 Central Texas Walk & Roll to Cure FSHD has gone VIRTUAL! We will see you on Saturday, September 12, 2020 Questions? Please reach out to the Chapter Director, Rachel Sartin at CenTexChapter@FSHDSociety.org, Or the Fundraising Leader, Ashely Bryan at ashleybryan1@gmail.com We look forward to "seeing" you on September 12th!
Please mark your calendars: The 2020 Chicagoland Walk & Roll to Cure FSHD has gone VIRTUAL! We will see you on Saturday, September 12, 2020 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 12th!
Please mark your calendars: The 2020 Colorado Walk & Roll to Cure FSHD has gone VIRTUAL! We will see you on Saturday, September 12, 2020 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: The 2020 Columbus Walk & Roll to Cure FSHD has gone VIRTUAL! We will see you on Saturday, September 12, 2020 Please reach out to the Chapter Director, Susan Aumiller, with any questions! She can be reached at ColumbusChapter@fshdsociety.org We look forward to "seeing" you on September 12th!
Please mark your calendars: The 2020 Connecticut Walk & Roll to Cure FSHD has gone VIRTUAL! We will see you on Saturday, September 12, 2020 Please reach out to the Walk Leader, Peter "Pogo" Pogozelski , with any questions! He can be reached at CTWnR@fshdsociety.org We look forward to "seeing" you on September 12th!
Please mark your calendars: The 2020 East Tennessee Walk & Roll to Cure FSHD has gone VIRTUAL! We will see you on Saturday, September 12, 2020 Please reach out to the Chapter Director, Jennie Harriman, with any questions! She can be reached at EastTNChapter@fshdsociety.org We look forward to “seeing” you on September 12th!
Please mark your calendars: The 2020 Greater Philly Walk & Roll to Cure FSHD has gone VIRTUAL! We will see you on Saturday, September 12, 2020 Please reach out to the Walk & Roll Leaders, Taylor & Colin Quigg, with any questions! They can be reached at PhillyWnR@fshdsociety.org We look forward to “seeing” you on... Read More »
Please mark your calendars: The 2020 Idaho Walk & Roll to Cure FSHD has gone VIRTUAL We will see you on Saturday, September 12, 2020 Please reach out to the Chapter Director, Minette Hale, with any questions! She can be reached at IdahoChapter@fshdsociety.org We look forward to "seeing" you on September 12th!
Please mark your calendars: The 2020 Kansas City Walk & Roll to Cure FSHD has gone VIRTUAL! We will see you on Saturday, September 12, 2020 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 12th!
Please mark your calendars: The 2020 Los Angeles Walk & Roll to Cure FSHD has gone VIRTUAL! We will see you on Saturday, September 12, 2020 Please reach out to the Walk & Roll Leader, Graciela Saunders, with any questions! She can be reached at gracielanoels@gmail.com We look forward to "seeing" you on September 12th!
Please mark your calendars: The 2020 Mid-Atlantic Walk & Roll to Cure FSHD has gone VIRTUAL! We will see you on Saturday, September 12, 2020 Please reach out to the Walk Leaders, Bobby Krasnansky & Rachael Schaffer, with any questions! They can be reached at robert.krasnansky@gmail.com We look forward to "seeing" you on September 12th!... Read More »
Please mark your calendars: The 2020 New England Walk & Roll to Cure FSHD has gone VIRTUAL! We will see you on Saturday, September 12, 2020 Please reach out to the Fundraising Leader, Lexi Pappas, with any questions! She can be reached at alexipappas19@gmail.com We look forward to “seeing” you on September 12th!
Please mark your calendars: The 2020 North Carolina Walk & Roll to Cure FSHD has gone VIRTUAL! We will see you on Saturday, September 12, 2020 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 12th!
Please mark your calendars: The 2020 Pacific Northwest Walk & Roll to Cure FSHD has gone VIRTUAL! We will see you on Saturday, September 12, 2020 Please reach out to the Walk & Roll Leader, Selina Lai, with any questions! She can be reached at laistar@verizon.net We look forward to "seeing" you on September 12th!
Please mark your calendars: The 2020 St. Louis Walk & Roll to Cure FSHD has gone VIRTUAL! We will see you on Saturday, September 12, 2020 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 12th!
Please mark your calendars: The 2020 South Carolina Walk & Roll to Cure FSHD has gone VIRTUAL! We will see you on Saturday, September 12, 2020 Please reach out to the Chapter Director, Frank Hanley, with any questions! He can be reached at SouthCarolinaChapter@fshdsociety.org We look forward to “seeing” you on September 12th!
Please mark your calendars: The 2020 Southwest Florida Walk & Roll to Cure FSHD has gone VIRTUAL! We will see you on Saturday, September 12, 2020 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 12th!
Please mark your calendars: The 2020 Tampa Walk & Roll to Cure FSHD has gone VIRTUAL! We will see you on Saturday, September 12, 2020 Please reach out to the Chapter Director, Jane Pollock, with any questions! She can be reached at TampaChapter@fshdsociety.org We look forward to "seeing" you on September 12th!
Please mark your calendars: The 2020 Utah Walk & Roll to Cure FSHD has gone VIRTUAL! We hope to see you on Saturday, September 12, 2020 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 12th!
Please mark your calendars: The 2020 Wisconsin Walk & Roll to Cure FSHD has gone VIRTUAL! We will see you on Saturday, September 12, 2020 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 12th!
The National Virtual Walk & Roll to Cure FSHD is the only national event focused solely on funding progress for FSHD. Led entirely by dedicated volunteers, supported by staff, these events take place all over the nation. Find your local Walk & Roll HERE! No local Chapter-Led Walk & Roll near you? Don't worry! You can still... 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 »
This episode of FSHD Radio has been cancelled due to the wildfire situation in Oregon and scheduling conflicts. 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. Our guests this evening are the ever-popular Mitch Wade and Bill Herzberg, who... Read More »
1:00 pm ET | 12:00 pm CT | 11:00 am MT | 10:00 am PT. Kathryn Wagner, MD PhD Kathryn Wagner, MD PhD, has seen patients with FSH muscular dystrophy for more than 20 years. As director of the Center for Genetic Muscle Disorders at the Kennedy Krieger Institute and a Professor of Neurology and... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. Our guests tonight are last week's webinar speaker, Kathryn Wagner, MD PhD, and her colleague Doris Leung, MD PhD. Dr. Wagner has seen patients with FSH muscular dystrophy for more than... Read More »
From 10:00 AM to 1:00 PM Argentine time (GMT-3) FSHD Argentina is hosting this virtual conference on FSHD for Spanish-speakers in Latin American and Spain. Featuring leading LATAM researchers as well as gene therapy pioneer Scott Harper, PhD, this is the first time ever for a Spanish-language international meeting on FSHD. La intención de esta... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. Our guests are Jenny and Tony, a married couple who share information and offer encouragement on their YouTube channel in the context of their interabled relationship. Tony’s life with FSHD has... Read More »
1:00 pm ET | 12:00 pm CT | 11:00 am MT | 10:00 am PT. Leann Lewis, MSGC Katy Eichinger, DPT This past spring, the FSHD Society and FSHD UK distributed a survey from the University of Rochester to assess how the neuromuscular patient community was responding to the social distancing policies imposed by the... Read More »
Kathy Senecal and Sarah Pashe invite you to come support, empower, share and network with the FSHD community. This is a monthly meeting that will take place on the first Thursday of each month via Zoom web conference. Patients, caregivers and family members welcome! JOIN US from your computer or tablet! If needed, passcode is:... Read More »
Please join us for our very first (virtual) gathering of local FSHD families and friends in North/South Dakota and Western Minnesota! While COVID-19 has prevented us from meeting in person over the summer, we have decided to meet virtually over zoom to get to know one-another in hopes that one day soon we are able... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. Tonight's special guest is Josh Bergmann, multi-talented singer-songwriter-mandolinist. His band Rose Valley Thorns' website states that "Joshua Bergmann's immense passion for music brought The Rose Valley Thorns together. While pouring himself... 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). It is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers, share challenges,... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. Our guest tonight is Kent Drescher, PhD, co-director of the FSHD Society's Bay Area chapter and a retired clinical psychologist. He will talk about acceptance and commitment therapy (ACT), which has... Read More »
This month's webinar presenter is Molly White, Vice President, Medical Communications & Advocacy at Dyne Therapeutics. Molly brings a unique perspective on the impact of the FSHD community's role in therapy development. She previously served as chief executive officer of Myotonic, an organization dedicated to advancing research and enhancing the quality of life of people... Read More »
California Virtual Chapter Meeting Saturday, October 17, 2020 2:00pm - 4:00pm Pacific Time Zone Please join us Virtually LOG IN HERE The Los Angeles Chapter, along with the Bay Area and San Diego Chapters, is inviting you to an "Imagination Vacation"! Travel & Mobility - Since the pandemic has limited the places we can travel physically,... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. Our guest this week is Molly White, Vice President, Medical Communications & Advocacy at Dyne Therapeutics. In our webinar last week, White discussed her perspective on the impact of the FSHD... Read More »
The FSHD Society is happy to support the 5th Annual UPIN FAMILY CONFERENCE PROGRAM Since 2015, the Utah Program for Inherited Neuromuscular Disorders (UPIN) has hosted an annual conference to bring together leading researchers, clinicians, and families living with neuromuscular disorders. This year the event will be VIRTUAL! UPIN sees this as an opportunity for... 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 »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. Our guests tonight are Mitch Wade and Bill Hertzberg, our fitness gurus. They'll be demonstrating some of the workouts that have helped Bill with his FSHD symptoms and answer your questions.... Read More »
THIS EPISODE HAS BEEN RESCHEDULED FOR DECEMBER 2. SEE YOU THEN! 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. Our guest tonight is Eddie Barocas, an extraordinary champion for underdogs, who until recently served as Legal Director of the... Read More »
Kathy Senecal and Sarah Pashe invite you to come support, empower, share and network with the FSHD community. This is a monthly meeting that will take place on the first Thursday of each month via Zoom web conference. Patients, caregivers and family members welcome! JOIN US from your computer or tablet! If needed, passcode is:... Read More »
Virtual FSHD FAMILY DAY Join KUMC & the FSHD Society for our virtual FSHD Family Day event this November. This event is for patients and family members to connect and learn more about advances in FSHD research. November 7th at 9:00am - 2:00pm CST Because it is virtual, we welcome anyone from anywhere to join... 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). It is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers, share challenges,... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. This week we welcome back Dr. Jen Egert, psychologist and mindfulness coach. Just listening to her will calm you down. She offers wonderful insights into our lives and minds. Mark your... Read More »
Saturday November 14th, 11:00 am - 1:00 pm MT Virtual Zoom meeting: https://ucdenver.zoom.us/j/93149824739 Please mark your calendars to join us for our next support group meeting where we will discuss together the emotional and relational challenges of living with FSHD. In July we had the opportunity to hear from licensed social worker Mary O’Hara about... Read More »
Zoom Link Here It’s been a while! We miss seeing you so much, so we’d like to invite you to a year-end Chapter meeting on Saturday, Nov. 14th at 12pm ET. We hope you can join us!! Our preliminary agenda includes: A little daydreaming: What’s your favorite place you’d traveled, or hope to travel next? Feel free... Read More »
November 15, 12:00PM ET Hey, New Englanders! It’s been a while since we’ve been able to see each other, and we miss you! We know there are some new folks out there as well that we want to welcome into our community. Until we can get together in-person again, we’d love for you to join... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. Mark your calendar. Invite your friends to a listening party and chat with fellow Facebook listeners in the comments section. It’s a great community event! Whether you just need someone to... Read More »
Russell Butterfield, MD PhD November 19th, 2020: 1:00PM ET This month's webinar shines a spotlight on an ambitious FSHD genetic study led by Russell Butterfield, MD, PhD and Bob Weiss, PhD of the University of Utah. One of the landmark studies in FSHD involved a 1950 publication involving more than 1200 members of an extended... Read More »
Chicago Chapter Meeting Saturday, November 21, 2020 9:00am-10:30am Central Time Join Here Please join us for a casual Chapter Coffee Hour! Bring your favorite mug and join us over Zoom for some friendly catch-up, FSHD Society updates, and maybe even a trivia question or two. At our last chapter meeting this spring, Elan (a high... Read More »
Saturday November 21st, 12p-1p ET Join Zoom Meeting from your computer or tablet: https://us02web.zoom.us/j/89829813766?pwd=MTNkYlFIdHgxSGRUVnpENHJFZkhpdz09 Meeting ID: 898 2981 3766, Passcode: FSHD Or by phone 646-558-8656, Meeting ID: 898 2981 3766 We are long overdue for a gathering! While COVID-19 may keep us from getting together in person, we can still gather virtually. Join your... Read More »
8:00 - 9:00 PM ET 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 restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. As this is the eve before Thanksgiving, we thought it would be fitting to talk about gratitude. What are you thankful for? Call Tim at 414-375-2561 to share your thoughts, or post... Read More »
#GivingTuesday is a global day of giving fueled by the power of social media and collaboration. Join us today for our second annual GivingTuesday Radiothon to raise funds and worldwide awareness of Facioscapulohumeral muscular dystrophy (FSHD). Streamed over Facebook Live, our intrepid host Tim Hollenback will conduct nonstop interviews from 8:00 a.m. to 10:00 p.m.... Read More »
Tim Hollenback, FSHD Radio host 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live on the first Wednesday evening every month. Our guest tonight is Eddie Barocas, an extraordinary champion for underdogs, who until recently served as Legal Director of the American... Read More »
Kathy Senecal and Sarah Pashe invite you to come support, empower, share and network with the FSHD community. This is a monthly meeting that will take place on the first Thursday of each month via Zoom web conference. Patients, caregivers and family members welcome! JOIN US from your computer or tablet! If needed, passcode is:... Read More »
All-PA Year-End Chapter Meeting Saturday, December 5, 2020 10:00am-11:00am ET Join Here It’s been a long time since we’ve seen each other, and we miss you! We hope you will join us for a year-end meeting with the Greater Philadelphia and Western PA Chapters, bringing the entire state-wide community together! We are planning some fun... Read More »
Greater Toronto Area December 5th 11:00am-12:00pm ET Please join us for a VIRTUAL gathering of local FSHD families and friends in the Greater Toronto Area. Let's re-connect with old friends, and get to know new friends! While COVID-19 prevents us from meeting in person, we can meet virtually over zoom in hopes that one day... Read More »
Virtual Year-End Party! Saturday December 5, 2020 2:00pm - 3:30pm Mountain Time Join Us Here We’re trying something new, and we hope you’ll join us: You’re invited to the Arizona, Idaho, Pacific Northwest and Utah Virtual Year-End Party!! Bring your festive spirit: ugly sweaters, party hats, punny jokes, and fun Zoom backgrounds are all highly... Read More »
Holiday Meeting! Sunday, December 6, 2020 4:00pm – 5:30pm Pacific Time Join Us Here You’re invited to the California Virtual Year-End Holiday Meeting!! Our Bay Area, San Diego, Los Angeles, and Sacramento Chapters of the FSHD Society are joining for our Holiday Meeting! This will be a chance to visit with friends – and meet new... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. Call Tim at 414-375-2561 to share your thoughts, or post questions and comments in the Facebook comments section. Our guest this week is Missy Dixon, mental health counselor at the University... Read More »
3:00 pm ET | 2:00 pm CT | 1:00 pm MT | 12:00 pm PT. Last spring, shortly after states began locking down, Drs. Ghinwa Dumyati and Rabi Tawil from the University of Rochester presented a webinar on the COVID-19 pandemic. In the eight months since, researchers around the world have worked at a breakneck... Read More »
Join Us Virtually HERE We’re trying something new, and we hope you’ll join us: You’re invited to the Southeast Regional Virtual Year-End Party!! We wanted a chance to visit with friends – and meet new ones in our part of the world – before 2021, and we all could use a little lighthearted fun. So... Read More »
Year-End Virtual Meeting and Holiday Social The CenTex Chapter of the FSHD Society welcomes all of our fellow Texas FSHD family and friends to a virtual year-end meeting, and Holiday ‘social’! WHEN: Saturday, December 12th 2-3:30 CT WHERE: Via Zoom WHAT: Hosted by Rachel Sartin, CenTex Chapter Director. FSHD UPDATES: Mark Stone, CEO of the FSHD Society,... 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). It is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers, share challenges,... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Mitch Wade and Bill Herzberg Join host Tim Hollenback on Facebook Live every Wednesday evening. Call Tim at 414-375-2561 to share your thoughts, or post questions and comments in the Facebook comments section. In our final episode for 2020, we are... Read More »
Webinar sponsored by Allard This month's webinar addresses two frequently mentioned topics for the FSHD Community: knee hyperextension and spinal issues such as lordosis that result from the weakening of core muscles. Orthotic braces and supports can provide solutions for some individuals. Our speaker is Bob Meier (ABC CO #3818). Bob has been active in the... 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 »
Hello All, I do hope this first email of the new year finds you and your loved ones healthy and safe. We are all hoping for better days in 2021. One way to help make that happen is to join us for our first meeting of this new year! I’m delighted to announce our guest... Read More »
How did your holidays go? With families and large groups discouraged from gathering, this has certainly been a different season for many, while for others, holidays may already have been a lonely time. Would you like to talk about how things went? This is our monthly Zoom meeting on Wellness, held on the second Monday... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Starting this month, FSHD Society will be streamed live on YouTube on the second Tuesday of each month at 9:00 pm ET. Our host is Tim Hollenback. You can call in at 414-375-2561 to share your thoughts, or post questions and comments... Read More »
Colorado New Year Kick-Off Saturday, January 16, 2021 11:00 am - 1:00 pm, MST https://ucdenver.zoom.us/j/93149824739 Join us after the holidays as we kick-off the new year with a fun, social gathering! Put on your game hats and come ready to chat, connect, and relax with your fellow chapter members. We look forward to "seeing"... Read More »
