Lighting the Way to a Cure

FSH Society Radio – Two perspectives on living with FSHD

Join us via Facebook Live on Wednesday, January 30th, at 8:00 pm Central / 9:00 pm Eastern time for our live interview with two people from the Chicagoland area who live with FSHD. Ramsey Shahed is a 21 year old student at DePaul University studying for his master’s in cybersecurity. He was diagnosed around ate 14 and has... Read More »

Arizona Chapter Meeting

Southeast Regional Library, Alcott Room 775 N. Greenfield Road - Gilbert, Gilbert, AZ

Please join us for the next Arizona Chapter meeting! We will be discussing updates about upcoming events and chapter activities. We may have a video/audio conference line available for those who wish to attend but can’t be there in person. Please stay tuned as our agenda formalizes – More information to come! Hope to see... Read More »

Arizona Chapter Lunch Gathering

Brother John's Beer, Bourbon & BBQ

Please join us for the next Arizona Chapter meeting! We will be discussing updates about upcoming events and chapter activities. This venue has great wheelchair accessibility and very accommodating staff. There is plenty of off-street parking and it’s close to two bus routes. We hope to see you there! ~Ray Jordan & Cyndi Segroves and... Read More »

Webinar: CRISPR strategy to treat FSHD

Charis Himeda, PhD, will discuss her pioneering work to demonstrate that CRISPR gene-editing technology can be used to silence the DUX4 gene. She will give us an update about her progress toward developing a treatment, as well as answer your questions more generally about the revolutionary (and controversial) technology that has taken medical research by storm. CLICK... Read More »

Radio show: David Younger, PhD, on FSHD and intimate relationships

Join radio host Tim Hollenback via Facebook Live on Wednesday, September 25, at 9:00 PM EST for a conversation with Dr. David Younger, a clinical psychologist based in Austin, Texas. He was diagnosed with FSHD at age four, the same time as his mother and grandmother were also found to have the condition. In a compelling blog post,... Read More »

Arizona Chapter Meeting & Webinar Discussion

Robertson Fuel Systems 800 West Carver, Ste. 101 - Tempe, Tempe, AZ

Please join Arizona Chapter Directors Landon & Marie Morrell for the next AZ Chapter Meeting! This is a VERY special meeting, as we’ll be discussing the webinar from the same morning featuring Michelle Mellion from Fulcrum Therapeutics! Please register for the webinar, and plan to watch it before coming to the meeting so we can... Read More »

Recurring

FSHD Radio Sequester Camp

Facebook Live

CHANGE OF TIME TO: 7:00 PM ET | 6:00 PM CT | 5:00 PM MT | 4:00 PM PT 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... Read More »

Recurring

FSHD Radio Sequester Camp

Facebook Live

CHANGE OF TIME TO: 7:00 PM ET | 6:00 PM CT | 5:00 PM MT | 4:00 PM PT 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... Read More »

Recurring

FSHD Radio Sequester Camp

Facebook Live

CHANGE OF TIME TO: 7:00 PM ET | 6:00 PM CT | 5:00 PM MT | 4:00 PM PT 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... Read More »

FSHD Radio Sequester Camp – Cancelled

Facebook Live

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... Read More »

Recurring

FSHD Radio Sequester Camp

Facebook Live

9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT 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.... Read More »

Recurring

FSHD Radio Sequester Camp

Facebook Live

9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT 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.... Read More »

Arizona Virtual Chapter Meeting

Arizona AZ

Thursday, June 18, 2020 7:00pm-8:00pm Arizona Time JOIN THE ZOOM MEETING HERE https://us02web.zoom.us/j/88930381251 The first half of this year has been challenging for everyone. We hope that you are staying safe and able to look after your physical and mental well-being. This is a challenging and exciting time for the FSHD Society. This will be... Read More »

FSHD Radio Sequester Camp

Facebook Live

7:00 PM ET | 6:00 PM CT | 5:00 PM MT | 4:00 PM PT 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.... Read More »

Arizona Walk & Roll to Cure FSHD

Arizona AZ

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!

Recurring

FSHD Society Radio with civil rights lawyer Ed Barocas

Facebook Live

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 »

Wellness Hour (Virtual Meeting)

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 »

FSHD Society Radio – singer-songwriter MaRynn Taylor

Facebook Live

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 »

Wellness Hour (Virtual Meeting)

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 »

Wellness Hour (Virtual Meeting)

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 »

Virtual Chapter Meeting with Utah, Arizona and Idaho

utah salt lake city, UT

Virtual Meeting with Utah, Arizona and Idaho Saturday, March 13, 2021 2:00-3:00pm MT JOIN THE ZOOM MEETING HERE We hope you’ll join us on for a collaborative chapter meeting. We will have special guest speakers from the University of Utah physical therapy department speaking about: General Exercise for neuromuscular disorders More specific exercise guidelines for... Read More »