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 »
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 »
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 »
Join host Tim Hollenback on October 30, 2019 on Facebook Live for a conversation with the fantastic Alan Brown. Originally scheduled for July 31, the show had to be rescheduled due to technical difficulties. Alan, of Holicong, Pennsylvania, is the director of business development at NFL Films, the company that produces commercials, television programs, feature films, and... Read More »
Jenny Hasenjaeger Levi Benson FSHD Society radio welcomes singer songwriters Levi Benson and Jenny Hasenjaeger this month. They share an FSHD diagnosis and a love of music. Levi Benson was featured earlier this year in FSHD Advocate and on our blog. Since the time he performed his first childhood song, “I Love My Lips,” made... Read More »
#GivingTuesday is a global generosity movement unleashing the power of people and organizations to transform their communities and the world. We are marking the day by holding our first GivingTuesday Telethon. Streamed over Facebook Live, our Telethon host will interview leaders in our community—activists, celebrities, scientists, doctors, people doing awesome things—to raise worldwide awareness of... Read More »
This year, Acceleron’s ACE-083 drug is expected to complete its phase 2b trial, and Fulcrum is conducting its trial of Dr. Rabi Tawil the first drug intended to repress DUX4, the gene implicated in causing FSHD. This is a good time to brush up on the vocabulary of clinical trials and the FDA approval process,... Read More »
Meredith Huml Join radio host Tim Hollenback via Facebook Live on Wednesday, December 18, at 9:00 PM ET | 8:00 PM Central. His guest this month is Meredith Huml, director of the North Carolina chapter. Diagnosed at age 12 with a "disease she had never heard of," Meredith faced the wrenching loss of her beloved dancing.... Read More »
Scott Harper,PhD Join radio host Tim Hollenback via Facebook Live on Wednesday, January 8, at 9:00 PM ET | 8:00 PM Central. His guest this month is FSHD research rock star Scott Harper, PhD, a leader in the effort to develop gene therapy. Harper is principal investigator at the Center for Gene Therapy at the Research... Read More »
Informational Webinar Our webinar on January 20th at noon U.S. Eastern Time will introduce our Voice of the Patient Forum (taking place on April 21) and answer your questions about how to be involved. This meeting is the FSHD Community’s platform to present testimony by patients and family caregivers and educate the FDA on how... Read More »
Justin and his family at the Magic Kingdom. 9-10 pm ET | 8-9 pm CT | 7-8 pm MT| 6-7 pm ET Join host Tim Hollenback on Facebook Live for a chat with Justin TurfTank VanLanduit, who was diagnosed with FSHD in 2013 at the age of 33. "It was a blow to be told... Read More »
Julie Cohen, MSc, genetic counselor 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.... Read More »
Tim Hollenback, FSHD Radio host 6:00 PM ET | 5:00 PM CT | 4:00 PM MT | 3:00 PM PT Call-in number: (262) 422-6369 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... Read More »
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 »
Lynn Stevens 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.... Read More »
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 »
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.... Read More »
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 »
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 »
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.
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... Read More »
Tim Hollenback, FSHD Radio host 12:00 PM ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM 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.... Read More »
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... Read More »
Dr. Anthony Romeo NOTE CHANGE OF DATE. Join us for our webinar on scapular stabilization surgery at 1:00 pm ET | 12:00 pm CT | 11:00 am MT | 10:00 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... Read More »
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). The Wellness Hour is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers,... Read More »
1:00 pm ET | 12:00 pm CT | 11:00 am MT | 10:00 am PT. Kathryn Wagner, MD PhD Kathryn Wagner, MD PhD, has seen patients with FSH muscular dystrophy for more than 20 years. As director of the Center for Genetic Muscle Disorders at the Kennedy Krieger Institute and a Professor of Neurology and... Read More »
1:00 pm ET | 12:00 pm CT | 11:00 am MT | 10:00 am PT. Leann Lewis, MSGC Katy Eichinger, DPT This past spring, the FSHD Society and FSHD UK distributed a survey from the University of Rochester to assess how the neuromuscular patient community was responding to the social distancing policies imposed by the... Read More »
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 caregivers. Please respect our rules... Read More »
#GivingTuesday is a global day of giving fueled by the power of social media and collaboration. Join us today for our second annual GivingTuesday Radiothon to raise funds and worldwide awareness of Facioscapulohumeral muscular dystrophy (FSHD). Streamed over Facebook Live, our intrepid host Tim Hollenback will conduct nonstop interviews from 8:00 a.m. to 10:00 p.m.... Read More »
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 »
3:00 pm ET | 2:00 pm CT | 1:00 pm MT | 12:00 pm PT. Last spring, shortly after states began locking down, Drs. Ghinwa Dumyati and Rabi Tawil from the University of Rochester presented a webinar on the COVID-19 pandemic. In the eight months since, researchers around the world have worked at a breakneck... Read More »
8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT As we close out the year, we'll gather to share companionship and conversation. What has the past year been like for you? How are you handling the holidays? What are you doing to take care of yourself? How can this group... Read More »
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 »
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 »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT We refer often to MRI (magnetic resonance imaging) as an almost magical way to peer inside the body and see what's going on with our muscles. MRI is a key component of Fulcrum's ReDUX4 clinical trial for FSH muscular dystrophy.... Read More »
8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT We are rebranding this virtual meeting from "Sharegiver Hour" to "Family Hour" in recognition of the fact that many family members are not directly providing care. But FSHD affects the whole family. This monthly meeting is for everyone who has loved... Read More »
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 »
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 caregivers. Please respect our rules... Read More »
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 »
8:00 - 9:00 PM ET This monthly meeting is for those of you who are providing care to loved ones with FSHD. To spark discussion, we're recommending this short article in Time magazine: How to Help a Caregiver Without Saying Stay Positive. Don't worry if you don't have time to read it. Join us anyway!... Read More »
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 »
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 caregivers. Please respect our rules... Read More »
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). The Wellness Hour is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers,... Read More »
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 caregivers. Please respect our rules... Read More »
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). This month we will talk about transitions, which are an inevitable fact of life for anyone living with a progressive condition like... Read More »
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). The Wellness Hour is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers,... Read More »
8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT We'll be discussing the recent Fulcrum clinical trial results with the FSHD Society's June Kinoshita, director of research and patient engagement. What do these results mean, and how are you and your loved ones with FSHD processing the information? This monthly... Read More »
This month, we'll be discussing the recent Fulcrum clinical trial results with the FSHD Society's June Kinoshita, director of research and patient engagement. For many of us, this news is top of mind, so we want to provide the space to discuss the study and share how we are feeling and processing the information. Our... Read More »
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 caregivers. This month, we have... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us for 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). Each month, we'll have a conversation... Read More »
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 caregivers. This month, June Kinoshita,... Read More »
Join us this month for a conversation on a subject that most people with FSHD are all too familiar with--fatigue. When does it hit you? How do you cope when it happens? How do you avoid it? And how does fatigue and the frustration and sadness of not having the energy to do your work... Read More »
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 caregivers. Please respect our rules... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, FSHD Society member Donna Russo will start things off with a 15-minute chair yoga session. This will be a great way to get your body activated and start a conversation about self-care. Our monthly Zoom meeting on Wellness... Read More »
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 caregivers. Please respect our rules... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Matt Beke, University of Florida Food is essential to our health and is also laden with a lot of emotional freight, both good and bad (especially as we head into holiday season!). This month, we've invited Matt Beke, a clinical... Read More »
8:00 - 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Matt Beke, University of Florida We’ve invited Matt Beke, a clinical dietician at the Fixel Center for Neurological Diseases at the University of Florida, to join us this evening to talk about food, health, and self-care. Matt is a Registered Dietitian... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us this month to learn about stress reduction through Mindfulness. Dr. Jennifer Egert will lead us through a brief introduction and exercise in Mindfulness. Then we'll break up into smaller conversation groups so everyone will have a chance to... Read More »
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