Lighting the Way to a Cure

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FSHD Radio Sequester Camp – Cancelled

May 27 @ 6:00 pm - 7:00 pm
Facebook Live, United States
FSHD Radio Live on Facebook

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…

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FSHD Society Sequester Camp – A new genetic test for FSHD

May 28 @ 1:00 pm - 2:00 pm
FSHD Society Sequester Camp

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…

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Fitness workouts with Bill and Mitch

Jun 1 @ 3:00 pm - 3:30 pm
|Recurring Event (See all)

An event every week that begins at 3:00 pm on Monday, repeating until Jun 1, 2020

Home fitness equipment

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 Radio Live on Facebook

FSHD Society Radio

Jun 3 @ 8:00 pm - 9:00 pm
|Recurring Event (See all)

An event every month that begins at 8:00 pm on day First of the month, repeating until Dec 2, 2020

Facebook Live, United States

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!

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FSHD Society Sequester Camp – Adapting your home for safety

Jun 4 @ 1:00 pm - 2:00 pm
FSHD Society Sequester Camp

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…

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FSHD Connecticut Connections

Jun 4 @ 7:00 pm - 8:30 pm
|Recurring Event (See all)

An event every month that begins at 7:00 pm on day First of the month, repeating until Dec 31, 2020

Connecticut Virtual Meeting, https://zoom.us/j/442453571, Or Telephone: 669-900-6833, Meeting ID: 442 453 571 CT United States

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

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FSHD Society Sequester Camp – Stem Cell Research in FSHD

Jun 11 @ 1:00 pm - 2:00 pm
FSHD Society Sequester Camp

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…

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Central Texas Virtual Chapter Meeting

Jun 14 @ 2:00 pm - 3:30 pm
Virtual, TX United States

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

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World FSHD Day

Jun 20
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

Jun 25 @ 10:00 am - Jun 26 @ 2:00 pm
web conference, Hyattsville, Maryland

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 Classroom

2020 FSHD Connect

Jun 27 @ 10:00 am - 6:30 pm

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 Your Role in Drug Development

Voice of the Patient Forum for Drug Development

Jun 29 @ 10:00 am - 3:30 pm
web conference, Hyattsville, Maryland

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…

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FSHD Radio Live on Facebook

FSHD Society Radio

Jul 1 @ 8:00 pm - 9:00 pm
|Recurring Event (See all)

An event every month that begins at 8:00 pm on day First of the month, repeating until Dec 2, 2020

Facebook Live, United States

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

Jul 2 @ 7:00 pm - 8:30 pm
|Recurring Event (See all)

An event every month that begins at 7:00 pm on day First of the month, repeating until Dec 31, 2020

Connecticut Virtual Meeting, https://zoom.us/j/442453571, Or Telephone: 669-900-6833, Meeting ID: 442 453 571 CT United States

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

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San Diego Walk & Roll to Cure FSHD

Jul 11 @ 8:00 am - 12:00 pm
Harbor Island Park, 1875 Harbor Island Dr. - San Diego
San Diego, CA United States

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…

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Colorado Virtual Chapter Meeting

Jul 11 @ 11:00 am - 12:30 pm
Virtual, Denver, United States

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

Aug 5 @ 12:00 pm - 1:00 pm
Zoom Web Conference, https://zoom.us/j/442453571, Or Telephone: 669-900-6833, Meeting ID: 442 453 571
Kansas City, MO United States

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…

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FSHD Radio Live on Facebook

FSHD Society Radio

Aug 5 @ 8:00 pm - 9:00 pm
|Recurring Event (See all)

An event every month that begins at 8:00 pm on day First of the month, repeating until Dec 2, 2020

Facebook Live, United States

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

Aug 6 @ 7:00 pm - 8:30 pm
|Recurring Event (See all)

An event every month that begins at 7:00 pm on day First of the month, repeating until Dec 31, 2020

Connecticut Virtual Meeting, https://zoom.us/j/442453571, Or Telephone: 669-900-6833, Meeting ID: 442 453 571 CT United States

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 Radio Live on Facebook

FSHD Society Radio

Sep 2 @ 8:00 pm - 9:00 pm
|Recurring Event (See all)

An event every month that begins at 8:00 pm on day First of the month, repeating until Dec 2, 2020

Facebook Live, United States

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 »
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