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 »

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 »

Atlanta Walk & Roll to Cure FSHD

Chattahoochee Nature Center Ben Brady Lakeside Pavilion 9135 Willeo Rd, Roswell, GA

Save the date: The 2019 Atlanta Walk & Roll to Cure FSHD has been scheduled! We hope to see you on Sunday, September 29th, 2019 at the Chattahoochee Nature Center in the Ben Brady Lakeside Pavilion, Roswell, GA! To learn all about our fantastic event, please Click HERE! To REGISTER to participate, please Click HERE! To make a DONATION in support of this event,... Read More »

Atlanta Chapter Virtual Meeting

4:00 PM ET/3:00 PM CT/2:00 PM MT/1:00 PM PT Please join us for a Virtual Chapter meeting on Friday, April 3rd! We are thrilled to announce that we will be joined by special guest speaker, Dr. Nicholas Johnson from VCU! He will be speaking to the group about clinical trials: their significance, how to get... 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 »

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 »

Atlanta Walk & Roll to Cure FSHD

Atlanta, GA Atlanta, GA

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!

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 »

Southeast Regional Virtual Year-End Party!!

Atlanta, GA Atlanta, GA

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 »

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 »

Southeast Chapters Meeting with Jamshid Arjomand

Atlanta, GA Atlanta, GA

Virtual Chapter Meeting with Jamshid Arjomand Wednesday, March 31, 2021 5:00pm-6:00pm Eastern Time JOIN THE ZOOM MEETING HERE Have a question about the genetics behind FSHD? Curious about the state of research in the FSHD field? Please join us on Monday, March 29th for a Q&A meeting with the FSHD Society’s Chief Science Officer, Dr.... Read More »

Atlanta Chapter Watch Party for World FSHD Day

Grub Kitchen and Bar 1110 Hammond Dr, Sandy Springs, GA

Saturday, June 20, 2021 Grub Kitchen and Bar 1110 Hammond Drive, Suite 35 Sandy Springs, GA 30328 ​​​​​​​​​​Please join us once again to watch the King & Queen Buildings light up orange in honor of World FSHD Day! This year, we plan to meet up at Grub Kitchen & Bar, located at Perimeter Place Town Center,... Read More »

2021 Atlanta Walk & Roll to Cure FSHD!

Atlanta, GA Atlanta, GA

Please mark your calendars for the 2021 Atlanta Walk & Roll! We will see you on Saturday, September 18, 2021 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 18th!