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8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT In some individuals with FSHD, surgery to anchor the shoulder blades to the ribcage can help restore the ability to raise the arms above shoulder height. For the first time ever, we are convening a group of individuals who have […]
Join host Tim Hollenback and special guest Chelsea Moeller for a discussion of living with FSHD, from diagnosis to trial participation. Tim also teases some updates to FSHD Radio. On the 2nd Tuesday of every month, we will bring you a new episode of FSHD Radio: Community Profiles. This long-form show includes profiles of the […]
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT For parents, figuring out how to advocate in schools for a child with a disability is like venturing into a jungle without a map or a compass. Having someone to guide you is invaluable. Our guest this month is Shauna […]
With Nicol Voermans, MD PhD, and Nathaniël Rasing, MD 19:00 CET | 18:00 UK | 1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00am PT While FSHD patients wait for new drugs to slow the progression of muscle weakness, Dr. Voermans emphasizes that there are many interventions already that can have […]
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Dear friends, Welcome to the "Third Thursday" meetings of the North Carolina Chapter! Whether or not you've attended our group's events before, we hope you will join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we are […]
6:00pm ET | 5:00pm CT | 4:00pm MT | 3:00pm PT Virginia Chapter Monthly Virtual Meeting (occurs every 4th Tuesday of the month). RSVP via the below button to ensure you receive the reminder and zoom link. Please join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we […]
Join us for a Virtual Meeting! Please join us for our "Welcome to 2024" meeting, with lots of exciting news about current and upcoming clinical trials, as well as our guest presenter, Anna Gilmore! Anna has moved to the new position of FSHD Navigator. As Navigator, she helps families by providing resources and information to […]
Join host Tim Hollenback for a special conversation with Marisa Spain. Marisa, known for Disabled in Nature, her YouTube channel and Instagram, discusses living with Early On-Set FSHD, barriers to receiving mobility devices and assistance, and accessibility in nature and outdoor environments. Share your thoughts, or post questions in the comments section. You can also […]
18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT We kick off 2024 with something new and completely different. At the first session on January 11, we launched the “0 to 1000” 14 Day Challenge… – Pick an exercise, – Start […]
Idaho Chapter Anniversary Dinner DATE: Thursday, January 25, 2024 TIME: 6:30 - 8:30 pm MT WHERE: Louie's Pizza & Italian Restaurant, 2500 E Fairview Ave, Meridian, ID 83642 DETAILS: Join us for a special dinner to celebrate the anniversary of our chapter's launch! Come celebrate with our Idaho community as we reflect on the amazing work we've done as a […]
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we […]
7:00pm ET | 6:00pm CT| 5:00pm MT | 4:00pm PT EVENT: Columbus Chapter Meeting DATE: Wednesday, January 31, 2024 TIME: 7:00 pm – 8:00 pm EST WHERE: Zoom DETAILS: Join us for our upcoming chapter meeting! Anna Gilmore of FSHD Society will deliver an update re: current clinical trials and the clinical trial enrollment process.
8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday of the month for a virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Thanks to our members for responding to our annual survey! Based on your feedback, this month's discussion topics revolve around planning for next steps: What to do when your current care giving plan isn’t working […]
18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT This month, Frank Hanley will present a series of exercises for the hip flexors. “I have had some difficulty with steps for a while," he says. "Suddenly, climbing steps has become quite a […]
9:00am ET | 8:00am CT | 7:00am MT | 6:00am PT Join us for a virtual meeting! Saturday, February 10th at 9am ET Dear Friends, Join us for our regular bi-monthly meeting - to provide consistent communication and camaraderie among our group. PLEASE RSVP to receive the Zoom link. Hope to “see” you there! Warmly, David […]
3:00pm ET | 2:00pm CT | 1:00pm MT | 12:00pm PT Pacific Northwest Chapter Meeting, 12:00-2:00pm PT at the Sellwood Library Meeting Room Address: 7860 SE 13th Ave, Portland 97202 New Year Greetings to our PNW FSHD Community! We are looking forward to having our first meeting of the year in Portland, Oregon on Feb. […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month we will discuss Ayurvedic medicine, the ancient Indian system of integrative, holistic medicine. Treatments are personalized and include lifestyle, yogo, diet, and medicinal formulations, mostly plant-based. We will hear from individuals with FSHD who have used Ayurvedic approaches, […]
Tuesday, February 13th In this month's Community Profiles episode, Tim sits down with Jane Nemke, an accredited International Association Color Consultant and the founder of Designs to Thrive. Jane shares her inspiring journey into Universal Design as a means to create flexible and age-friendly living spaces, driven by her personal experience with FSHD. Through the […]
Breathing with FSHD, Andrea Klein 19:00 CET | 18:00 UK | 1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Today’s webinar discusses how to monitor and manage breathing issues that can arise in people with FSHD. Our presenter, Andrea Klein, founded Breathe with MD, Inc. in memory of […]
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Dear friends, Welcome to the "Third Thursday" meetings of the North Carolina Chapter! Whether or not you've attended our group's events before, we hope you will join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we are […]
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Please join Robert Ro and the Young Adults group for a discussion on Preventative Care & Managing Secondary Complications! Many of us face challenges beyond reach and mobility, or know that we are at greater risk for secondary complications, and […]
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT This month, we'll be sharing news from the FSHD Society's annual Volunteer Leadership Summit in Chicago. Debbie Eggleston and Kristin Zwickau attended in person while Ally Roets beamed herself in via Zoom. They will discuss the progress in pediatric FSHD […]
18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT We review the hip flexor exercises from two weeks ago. We will be doing exercises on the floor so you may want to use a yoga mat. Frank Hanley will present a […]
Tuesday, February 27th We’re thrilled to share a conversation with Danny Kurtzman and Shane Stanger, the duo behind Good Bad Things! Their film is currently making waves (and taking home awards!) in the festival circuit for its moving story as well as groundbreaking representation of disability. Danny, the film’s star, is an actor living with […]
6:00pm ET | 5:00pm CT | 4:00pm MT | 3:00pm PT Virginia Chapter Monthly Virtual Meeting (occurs every 4th Tuesday of the month). RSVP via the below button to ensure you receive the reminder and zoom link. Please join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we […]
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we […]
8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday of the month for a virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to […]
7:00-8:00pm ET | 6:00-7:00pm CST | 5:00-6:00pm MT | 4:00-5:00pm PT Please join us for a virtual chapter meeting on Wednesday, February 28, 2024, from 7:00pm - 8:30pm Eastern. Items we plan to cover include: 1. Meet our new FSHD Society Regional Director - Jenny Gast 2. Updates on what’s happening in the FSHD community […]
10:15am-1:00pm ET | 9:15am-12:00pm CST | 8:15-11:00am MT | 7:15-10:00am PT Please join us for our next Greater Philadelphia FSHD Chapter meeting on Saturday, March 2 from 10:15am – 1:00pm Eastern. Our special guest speaker will be Steven S. Brooks MD MBA FACC, Senior VP of Medical Sciences and Regulatory Affairs with Vita Therapeutics, and […]
7PM ET | 6PM CT | 5PM MT | 4PM PT Michigan Chapter - Virtual Meeting Please join us for a virtual chapter meeting on Tuesday, March 5, 2024, from 7pm - 8pm Eastern. No set agenda, this is simply a time for us to gather together and share our updates and adventures. RSVP via […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us for a presentation on menopause and women with FSHD, from Drs. Thornburg and Mitchell Linder, from the University of Rochester Medical Center, Ob-Gyn department. This is our second presentation from Dr. Thornburg. We […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we welcome Isaac and Ora Prilleltensky, who literally wrote the book on How People Matter. Ora is a regular moderator for the Wellness Hour. Her husband Isaac has presented several webinars on mental health and well-being. "Mattering" is […]
Tuesday, March 12 Tim will be joined by Lonwabo Nene, scriptwriter, filmmaker, and FSHD advocate from South Africa. If you've seen his engaging sessions on Feeling Fit, you know Lonwabo has invaluable insights to share! In this episode, he'll talk about his journey with FSHD, from the struggle for diagnosis to actively managing his symptoms […]
7PM ET | 6PM CT | 5PM MT | 4PM PT New England Chapter - Virtual Meeting Please join us for another great virtual chapter meeting! We will discuss current clinical trials, upcoming events, and formally meet Jenny Gast - our new FSHD Society Regional Director. We will also showcase some great talent from right […]
18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Rita Lynn (far right) with her family This month, Rita Lynn will lead sessions on adaptive yoga. Rita will focus on the meditative aspects of yoga during this Zoom session. She also […]
9:00 a.m. Mountain Time doors open | 10:00-3:00 p.m. MT conference sessions The FSHD Society, in collaboration with FSHD Canada Foundation and the University of Calgary, AB, Canada, is hosting the first-ever Canadian FSHD 360 conference. Dr. Lawrence Korngut and his colleagues will share the latest news on the Canadian clinical trial research network, cutting-edge […]
7-8pm ET | 6-7pm CT | 5-6pm MT | 4-5pm PT Texas Virtual Happy Hour, Sunday, March 17, 2024 TIME: 6:00 pm - 7:00 pm CT WHERE: Virtually via Zoom Pour your favorite beverage and come here the great news - FSHD 360 is coming to Texas! Join us for a virtual happy hour where […]
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Many of us have tried or are curious about CBD and medical marijuana to treat pain, anxiety, etc. Our featured guests this month, Claire Szabo-Cassella and Lou Cassella, will share their experiences in seeking relief for Claire, who lives with […]
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT As we plan the 2024 FSHD Connect conference--the largest gathering for patients, families, clinicians, and researchers--we want to provide activities and spaces for kids and teens. Join us to learn more about FSHD Connect and help us brainstorm fun and […]
Finding reliable health information on the Internet, with Tina Griffin 19:00 CET | 18:00 UK | 1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00am PT Most of us turn to “Dr. Google” to find medical and health information, but how do we know the information is trustworthy? When our health […]
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Dear friends, Welcome to the "Third Thursday" meetings of the North Carolina Chapter! Whether or not you've attended our group's events before, we hope you will join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we are […]
3:00-5:00pm ET | 2:00-4:00pm CT | 1:00-3:00pm MT | 12:00-2:00pm PT North Texas Chapter Come Together Lunch, Saturday, March 23, 2024 from 2:00 pm - 4:00 pm CT WHERE: Rodeo Goat (3111 Preston Rd, Frisco, TX) DETAILS: We will be hosting an in-person lunch on March 23rd in Frisco, TX. This lunch will be at […]
3:00pm MT | 2:00 PT | 5:00pm ET | 4:00pm CT | Hello Friends! I hope you can join us for our first meeting of 2024! WHEN: Saturday March 23rd, 2024 - 3pm MT WHERE: Lansdowne Arms, Library Room - 9352 Dorchester St., Highlands Ranch, CO 80129 WHAT: Special Guest Speaker will be Caitlin Prechel […]
In this episode of Straight Talk, Tim is joined by David Rubin, NYC Chapter Leader. After a successful career in business and accounting, David discusses how he found new passions, and a way to keep busy in retirement, through board service and Chapter Program leadership. If you've heard of Magic for a Cure or participated […]
6:00pm ET | 5:00pm CT | 4:00pm MT | 3:00pm PT Virginia Chapter Monthly Virtual Meeting (occurs every 4th Tuesday of the month). RSVP via the below button to ensure you receive the reminder and zoom link. Please join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we […]
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we […]
8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday of the month for a virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to […]
18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT As Rita Lynn has had to cancel her yoga session with us, we are happy to welcome Frank Hanley, who will lead us through some Qi Gong exercises. He always comes up […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month we will continue our discussion on what to do when your current care plan isn't working anymore. As always, expect a wealth of practical tips, sympathy, and the supportive company of awesome women. […]
9:00am ET | 8:00am CT | 7:00am MT | 6:00am PT NYC/NJ-area Virtual Chapter Meeting Saturday, April 6th, 2024 at 9am ET Dear Friends, Please plan to join us for our next virtual meeting, Saturday, April 6th, 2024 at 9am ET. This is the next in our series of regular bi-monthly meetings to provide […]
2:00-400pm | 1:00-3:00pm CT | 12:00-2:00pm MT | 11:00a-1:00pm Chicago Chapter Meeting, Saturday, April 6, 2024 from 1:00 - 3:00 pm CT WHERE: Northlake Library, 231 N Wolf Rd, Northlake, IL 60164 DETAILS: Join us on Saturday, April 6th at the Northlake Library for a special chapter meeting where we'll introduce our new Chicagoland Chapter […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, Rick Whitehead will share his experience having surgery to reinforce weak abdominal muscles (the cause of the "pregnant belly" silhouette). We're being tongue in cheek about this being a "tummy tuck," as it's not a cosmetic procedure but […]
9:00pm ET | 8:00pm CT | 7:00pm MT | 6:00pm PT British Columbia and Alberta Chapters - Virtual Meeting When: Wednesday April 10th, 6pm PT | 7pm MT Where: Virtually via Zoom, please RSVP below to receive the Zoom link What: We are excited to have special guest Lena Graham joining us! Lena is a […]
18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT We welcome back Trish Kean, who will lead us through a session of Shaking Qi Gong. Shaking helps us to open up our joints or energy gates and meridians allowing the free […]
8:30PM ET | 7:30PM CT | 6:30PM MT | 5:30PM PT Saturday, April 13, 2024, 6:30pm MT at the Boise State University Special Events Center Raise money to fund research into cures for FSHD. Don't miss the Idaho Talent Fest, featuring a variety of performers. Enjoy a night of entertainment and vote for your favorite […]
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Dani Liptak If you are experiencing some level of disability from your FSHD symptoms (or other issues, for that matter), what are your rights to accessible public spaces, work environments, education, etc.? Does the law protect you? Dani Liptak, a […]
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT When a child has a progressive, disabling condition like FSHD, the transition to adulthood and independent life can be challenge, as much for parents as for the new adult. Sherry Aiken guides many youths (and their families) through this process. […]
With Jennifer Egert, PhD, and patients and family members 19:00 CET | 18:00 UK | 1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00am PT This month's webinar will be a roundtable discussion on the challenges of communicating with those close to you about FSHD, how it is impacting you, and […]
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Dear friends, Welcome to the "Third Thursday" meetings of the North Carolina Chapter! Whether or not you've attended our group's events before, we hope you will join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we are […]
CANCELEED Due to the lack of RSVPs, we have sadly decided to cancel this event. One of the goals of our Alberta Chapter is to grow our connections and community in the Edmonton Area. We haven’t been successful in doing this with our last two events, and would love your feedback. What would you like […]
In this episode, FSHD Straight Talk host Tim Hollenback speaks with Trish about life during and after diagnosis. In this candid conversation Trish (last name withheld for privacy) and Tim discuss the impact of physical therapy, the frustrations that PTs often know or do more than PCPs, and additional intricacies and intimacies of living with […]
6:00pm ET | 5:00pm CT | 4:00pm MT | 3:00pm PT Virginia Chapter Monthly Virtual Meeting (occurs every 4th Tuesday of the month). RSVP via the below button to ensure you receive the reminder and zoom link. Please join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we […]
8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday of the month for a virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to […]
8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on Wednesday, April 24th for a virtual chapter meeting North Texas is opening to all Texas community members. During this chapter meeting, we will be joined by guest speaker, Attorney Brandon A. Rotbart, P.A. who will discuss […]
18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Donna Russo will lead today's session on chair yoga. Donna is a dancer, actress, and activist. She has performed with wheelchair dance troupes and made a series of YouTube videos, Donna on […]
9:00 a.m. US Central Time doors open | 10:00-3:00 p.m. US CT conference sessions Save the date!! The FSHD Society, in collaboration with the University of San Antonio Health Science Center, University of Texas Austin Medical School, and University of Texas Southwest Medical School, is hosting our first-ever Texas FSHD 360 conference. Dr. Matthew Wicklund […]
11:00am ET | 10:00am CT | 9:00am MT | 8:00am PT Ontario Chapter Brunch Meeting Saturday April 27th, 11:00am-1:00pm ET Milestones Richmond Hill (30 High Tech Rd. Richmond Hill ON L4B 4L9). Two of our members, Scott and Ali, will be sharing their experience with participating in the Fulcrum and Avidity interventional FSHD clinical trials. […]
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month's discussion will focus on promoting a positive outlook. Staying positive can be challenging while one is dealing with uncertainty and experiencing emotional needs of lifestyle changes. How do we cope with the pain […]
3:00-5:00pm ET | 2:00-4:00pm CT | 1:00-3:00pm MT | 12:00-2:00pm PT Sacramento Chapter Meeting Saturday, May 4, 2024 from 12:00 pm - 2:00 pm PT WHERE: Mimi's Cafe, 2029 Alta Arden Expy, Sacramento, CA 95825 DETAILS: Join us for yummy food and good conversation at Mimi's Cafe for lunch as we officially welcome our new […]
18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT This month we have the pleasure of welcoming Arielle Levy, a physical therapist who trained with Julie Herschberg (legendary in our community). We're eager to meet the next generation of PTs who […]
11:30am-12:30pm | 10:30-11:30am CT |9:30-10:30am MT | 8:30-9:30am PT Dakotas Chapter Meeting, Saturday, May 11, 2024 10:30 am - 11:30 am CT WHERE: 3247 47th St S, Fargo, ND 58104 DETAILS: Join us for a Dakotas Chapter Meeting where we will have the opportunity to connect and share updates with the community. This meeting will […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Chaplain Deb Calhoun Many of us procrastinate when it comes to planning for the future, especially when the future could include illness, disability, having to find caregivers, financial uncertainty, or the prospect of having to turn over control of your […]
In this laid back episode, Tim discusses music, San Diego chapter program involvement, and staying strong in the face of slow progression with Callum Arras. Bridging their nearly 20 year age gap, Hollenback and Arras find common ground in their belief that self-knowledge, willpower, and determination helps them maintain activities, mobility, and their sense of […]
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Josie Godfrey There is great progress toward new medicines for FSHD, but even when a drug does make it to market, patients may not be able to afford it because insurers and government payers often delay or deny access because they […]
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Dear friends, Welcome to the "Third Thursday" meetings of the North Carolina Chapter! Whether or not you've attended our group's events before, we hope you will join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we are […]
Saturday, May 18, 2024 Join the Denver Colfax Marathon Team for the FSHD Society! The Denver Colfax Marathon is a nationally recognized event featuring unique courses incorporating the iconic landmarks of the Mile-High City. REGISTER today and join our Team to fight FSH Muscular Dystrophy. The event starts at Denver’s City Park, on the east side […]
5:00pm ET | 4:00pm CT | 3:00pm MT | 2:00pm PT North Carolina Chapter Social Gathering Please join us for a casual dinner on May 18th at 5pm at Floyd & Blackies. I look forward to meeting all of you in person! Floyd & Blackies: 142 8th Avenue, Cramerton, NC 28032 Please RSVP below so […]
7PM ET | 6PM CT | 5PM MT | 4PM PT Western PA Chapter - Virtual Meeting Please join us on Monday, May 20th at 7:00pm ET for our next virtual chapter meeting. In addition to checking in with everyone, I would like to share my latest experiences at the Abilities Expo and the Day on […]
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT This month we'll learn about kratom, a medical herb, from Young Adults group co-moderator Chandler Young. About himself Chandler says "I’m 23 and live in North Carolina, was formally diagnosed with FSHD at 16 but showed symptoms very early in […]
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT CHANGE NOTICE: Instead of recapping Hill Day, we welcome our esteemed guest, Heloise Hoffmann. Heloise Hoffmann Our guest is Heloise Hoffmann, who will share insights about coping with the diagnosis of FSHD based on her personal journey from age 13, […]
7PM ET | 6PM CT | 5PM MT | 4PM PT New England Chapter - Virtual Meeting Please join us for our next virtual chapter meeting, taking place on May 22nd! We will discuss what's new with the FSHD Society, upcoming events on the calendar, as well as share adventures and stories amongst ourselves. Our […]
18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT This is part two of this month's series with Arielle Levy, a physical therapist who trained with Julie Herschberg (legendary in our community). Arielle will be discussing nerve mobility and pain. Postural impairments […]
When a busy schedule, family needs, and chronic pain limit your bandwidth, committing to regular exercise and healthy eating can be hard. In this episode of FSHD Straight Talk, host Tim Hollenback and guest Priscilla Sharun discuss their exercise routines, building strength through consistency, and the importance of committing to your health. For Priscilla, regular […]
6:00pm ET | 5:00pm CT | 4:00pm MT | 3:00pm PT Virginia Chapter Monthly Virtual Meeting (occurs every 4th Tuesday of the month). RSVP via the below button to ensure you receive the reminder and zoom link. Please join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we […]
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we […]
8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday of the month for a virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month's conversation topic is "How to keep a meaningful life in retirement or when you need to stop working." Many of us find fulfillment, identify, and a sense of mattering through our work outside […]
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Texas Community Social Hour Wednesday, June 5, 2024 Join us for a special Texas Social Hour and come catch-up with old friends or make some new. It's been a little over a month since we gathered as a community together for the Texas FSHD […]
7PM ET | 6PM CT | 5PM MT | 4PM PT Michigan Chapter Virtual Meeting Join us at our next virtual chapter meeting, scheduled for Thursday, June 6th at 7pm ET. No set agenda, this is simply a time for us to gather together and share our updates and adventures. RSVP via the below button […]
4:00-7:00pm ET | 3:00-6:00pm CT | 2:00-5:00pm MT | 1:00-4:00pm PT Pacific Northwest Day at the Ball Park Sunday, June 9, 2024, 1:00 pm - 4:00 pm PT WHERE: Cheney Stadium, 2502 S Tyler St, Tacoma, WA 98405 Details: Greetings my PNW FSHD Chapter friends! SUMMER is just around the corner and that means time […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our guest this month is Diane Corrinne Buck, Gourmet Food Store Owner & Cooking enthusiast. "Having started my interest in food and cooking as a young girl, over the years I have dedicated my free time to recipe development, refining […]
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen […]
Virtual registration open until June 9th 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. […]
18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Are you a ‘Mouth Breather’? Do you wake up in the morning with a headache? This month, Frank Hanley returns to discuss the effects of ‘mouth breathing’ and how FSHD can cause […]
Bay Area Chapter Meeting: Connect Watch Party Join the Bay Area Chapter for a special summer chapter meeting this year in Hollister, CA. Our Bay Area Chapter Directors, Kent and Sue Drescher, will be hosting a morning watch party of the FSHD Society Patient Connect Conference that will be taking place that same morning in […]
CONNECT 2024 will be hosted on June 15-16 in Denver, Colorado. CONNECT brings together world leaders in FSHD research, patient care, advocacy, education, and support. Held every two years, FSHD Connect is the world's biggest networking event for FSHD, bringing together hundreds of individuals and families living with FSH muscular dystrophy, clinicians, and researchers for […]
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT We are cancelling our June meeting because the Young Adults group will be recovering from a busy, exciting several days at the FSHD Connect conference in Denver. We will be back next month! FSHD Young Professionals is a social and […]
