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FSHD Radio Sequester Camp – Cancelled
THIS WEEK'S SHOW HAS BEEN CANCELLED DUE TO A SCHEDULING CONFLICT. TIM WILL BE BACK NEXT WEEK WITH HIS MONTHLY INTERVIEW SHOW. We're In This Together During this time of self-isolation because of the covid-19 crisis, it’s important to stay connected. Join FSHD Radio show host Tim Hollenback every Wednesday evening on Facebook Live for an open-ended conversation about whatever is on your mind. Whether you just need someone to talk to, are trying to solve a problem, or have ideas to…
Find out more »FSHD Society Sequester Camp – A new genetic test for FSHD
Dr. Alka Chaubey Join us this week for a webinar on a new genetic test for FSHD. Our speaker, Alka Chaubey, PhD, FACMG, is currently the Head of Cytogenomics at PerkinElmer Genomics. She is double board certified in clinical cytogenetics/genomics and clinical molecular genetics/genomics. In her current role, Dr. Chaubey has led the successful development and launch of several innovative products including the CNGnome test and a new FSHD assay utilizing Whole Genome Optical Mapping. Dr. Chaubey originally received her…
Find out more »Fitness workouts with Bill and Mitch
3:00 PM ET | 2:00 PM CT | 1:00 PM MT | 12:00 PM PT Mitch Wade and Bill Herzberg Fitness workout webinars with Bill Herzberg and his trainer Mitch Wade, owner of RAMP Fitness in Portland, OR. They were so impressed by the progress Bill has made in addressing his FSHD muscle weakness by working out with Mitch that they want to share some of their methods with you. Watch along with a family member, caregiver, or housemate who…
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FSHD Society Radio
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. 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 and chat with fellow Facebook listeners in the comments section. It's a great community event!
Find out more »FSHD Society Sequester Camp – Adapting your home for safety
Constantine Farmakidis, MD Our presenter today is Constantine Farmakidis, MD, from the University of Kansas Medical Center. In this seminar Dr. Farmakidis will discuss strategies for maximizing home safety, fitness and independence for patients with FSHD. A presentation will be followed by a period of questions and answers. This topic that may be of particular interest in the context of the Covid-19 pandemic when most are spending extended periods of time at home. Dr. Framakidis earned his medical degree and…
Find out more »FSHD Connecticut Connections
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 from your computer or tablet: https://zoom.us/j/442453571 Or iPhone one-tap : +16699006833,,442453571# Or by Telephone: 669-900-6833, Meeting ID: 442 453 571 RSVP to Kathy at CTChapter@fshdsociety.org
Find out more »FSHD Society Sequester Camp – Stem Cell Research in FSHD
Dr. Rita Perlingeiro Our webinar speaker this week is Dr. Rita Perlingeiro, Associate Professor of Medicine within the Lillehei Heart Institute at the University of Minnesota. Her primary research interests include understanding the molecular mechanisms controlling lineage-specific differentiation of pluripotent stem cells, and applying this information to efficiently generate tissue-specific stem/progenitor cells endowed with in vivo regenerative potential. Her work has potential applications in muscular dystrophy research and future therapies. She has received several awards and honors and has served…
Find out more »Central Texas Virtual Chapter Meeting
3:00 PM ET/2:00 PM CT/1:00 AM MT/12:00 AM PT Join us for a Virtual Central Texas Chapter Meeting! Sunday, June 14th Participate virtually at https://us02web.zoom.us/j/85194475188 OR By phone: 346-248-7799, Meeting ID: 851 9447 5188 This will be a great opportunity to get to know one another, talk about upcoming events, and plan for our Virtual Walk & Roll Event! We hope you can join us! Please contact CenTex Chapter Director, Rachel Sartin at CenTexChapter@FSHDSociety.org
Find out more »World FSHD Day
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 in place of their smile with the official hashtag #WorldFSHDDay. The campaign is designed to stand out on social media by combining the event’s official…
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2020 International Research Congress
Thanks to the diligent efforts of our program committee, we have reconfigured this year’s FSHD International Research Congress into a two-day online conference, to take place on June 25-26. This year’s congress will feature keynote talks and research presentations not readily available anywhere else. While the congress will be virtual, there will be plenty of time for live questions and discussion. The FSHD Society’s annual FSHD International Research Congress is the premier global conference exclusively focused on facioscapulohumeral muscular dystrophy…
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2020 FSHD Connect
The 2020 FSHD Connect. hosted by the FSHD Society, is the largest biennial educational and networking gathering of FSHD patients and families, researchers, and clinicians.
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Voice of the Patient Forum for Drug Development
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 meeting. IF YOU CANNOT ATTEND, PLEASE NOTIFY US BECAUSE CAPACITY IS LIMITED. If you reserved a room for the now-cancelled April 21 meeting, please contact…
Find out more »FSHD Society Radio
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. 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 and chat with fellow Facebook listeners in the comments section. It's a great community event!
Find out more »FSHD Connecticut Connections
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 from your computer or tablet: https://zoom.us/j/442453571 Or iPhone one-tap : +16699006833,,442453571# Or by Telephone: 669-900-6833, Meeting ID: 442 453 571 RSVP to Kathy at CTChapter@fshdsociety.org
Find out more »San Diego Walk & Roll to Cure FSHD
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 & Roll to Cure FSHD into a virtual team event. Register to "walk or roll" today, as a virtual team or individual walker. You will be given…
Find out more »Colorado Virtual Chapter Meeting
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
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Webinar on scapular stabilization surgery
Dr. Anthony Romeo Join us for our webinar on scapular stabilization surgery at noon ET | 11:00 am CT | 10:00 am MT | 9:00 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 jut out like an angel's wing. This can cause pain and prevent a person from being able to raise the arm. A solution that works for some patients is surgery…
Find out more »FSHD Society Radio
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. 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 and chat with fellow Facebook listeners in the comments section. It's a great community event!
Find out more »FSHD Connecticut Connections
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 from your computer or tablet: https://zoom.us/j/442453571 Or iPhone one-tap : +16699006833,,442453571# Or by Telephone: 669-900-6833, Meeting ID: 442 453 571 RSVP to Kathy at CTChapter@fshdsociety.org
Find out more »FSHD Society Radio
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. 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 and chat with fellow Facebook listeners in the comments section. It's a great community event!
Find out more »