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Wellness Hour (Virtual Meeting) – Personal transportation
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). Last month we all enjoyed a very informative and lively discussion about travel, dealing with air lines, hotels, and damaged power wheelchairs. By popular demand, we will continue on this topic and expand it to travel for people who are still walking as well as to local…
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FSHD Society Radio with Lori Brant, personal coach
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Lori Brant Join host Tim Hollenback on YouTube on the 2nd Tuesday of every month. Call Tim at 414-375-2561 to share your thoughts, or post questions and comments in the YouTube comments section. You can also watch the recording on Facebook or access the podcast on most any streaming channel. "Our guest this month is Lori Brant, a life coach who lives with FSH muscular dystrophy.…
Find out more »East TN Virtual Chapter Meeting
East TN Chapter Meeting Sunday, May 16th, 2-4pm, via Zoom https://us02web.zoom.us/j/86000688291?pwd=M25mSTRIT2Y0SUMwaHN3N0hmVWdZdz09 It’s been a while! Please join us for a “regroup” meeting of the East TN Chapter. We will host this meeting virtually, with hopes to gather together in person again soon. This will be an informal meeting, so come as you are! We will provide some updates from the FSHD Society, and mostly we want to hear how YOU are doing! So please mark your calendars for Sunday, May…
Find out more »Early-Onset Virtual Chapter Meeting
Early-Onset Chapter Wednesday, May 19, 2021 2:30pm-3:30pm Mountain Time JOIN THE ZOOM MEETING HERE Serving Parents of Children with Early-Onset/Infantile FSHD, the new Early-Onset FSHD Chapter is led by parents who know all too well the challenges of parenting a child with FSH Muscular Dystrophy. This group was formed by parents, for parents and families, to offer support, compassion and guidance. Our aim is to connect families, deepen community, and support FSHD families wherever they may be. Please join us as…
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FSHD University: The Job Talk
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Many individuals diagnosed with FSHD feel that they are unemployable or they should just give up and file for disability benefits. Lynn Stevens will talk about employment fallacies, assistive devices that can help you remain employed, career change strategies and where to turn for help in making such an important decision. Lynn Stevens is the Director of Workforce Development for Goodwill Industries of North Louisiana…
Find out more »Chicago Virtual Chapter Meeting
Chicagoland Chapter Meeting Saturday, May 22nd, 10am – 12pm CT Via Zoom: https://us02web.zoom.us/j/89875341910?pwd=WklkazZHQ2djck9MY3FPdzJuWDluUT09 It’s been a while! Please join us for a “regroup” meeting of the Chicagoland Chapter. We will host this meeting virtually, with hopes to gather together in person again soon. This will be an informal meeting, so come as you are! We will provide some updates from the FSHD Society, and mostly we want to hear how YOU are doing! So please mark your calendars for Saturday,…
Find out more »CenTex Virtual Chapter Meeting
Sunday, May 23rd, 2-4pm CT Zoom: https://us02web.zoom.us/j/81596450646?pwd=bnhSV2RmSzRpc1pUdDQ0V3FIMjlZUT09 Please join us for the next virtual gathering of the CenTex Chapter! The subject of this meeting is Adaptations: How do you do things differently to adapt to muscle weakness? Do you hold your ukulele differently now? Use barbeque tongs to get your laundry out of the dryer? We’re excited to share our own little “life hacks”, and to hear about new ideas from others! ~Rachel Sartin, CenTex Chapter Director
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Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET 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 restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
Find out more »Tampa and Southwest Florida Virtual Chapter Meeting
Saturday, May 29, 2021 12:00pm Eastern Time JOIN THE ZOOM MEETING HERE Please mark your calendars for a joint meeting of the Tampa and Southwest Florida chapters. We look forward to getting our groups together to connect, share resources, and support each other! We also have a special guest speaker: We will be joined by Dr. Nivedita Jerath, a neurologist in Winter Park, Florida. Read more about Dr. Jerath here. We hope you can join us, and we look…
Find out more »FSHD University – The MOVE Study
1:00 pm ET | 12:00 pm CT | 11:00 am MT | 10:00 am PT Kate Eichinger, DPT, and Johanna Hamel, MD. Presented by Johanna Hamel, MD, and Kate Eichinger, DPT, from the University of Rochester Medical School. When doctors diagnose individuals with a progressive condition like FSH muscular dystrophy (FSHD), they’re often asked, What does the future look like? Will I need to use an orthotic brace? How long do I have before I need to use a walker…
Find out more »New England Connections
YOU'RE INVITED to the first New England Connections meeting, Thursday June 3rd at 7pm ET. This meeting will be held virtually. This will be a casual, introductory meeting where we can start to get to know our FSHD family across our region! There is no set topic, and everyone is encouraged to participate in the discussion. The Connecticut group has been hosting successful support group-style meetings this way for over 3 years, and we can’t wait to see the group…
Find out more »FSHD Society Radio – Jammin’ with Jamshid
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Our guest this month is our very own Jamshid Arjomand, PhD, chief science officer. He'll update you about the latest research and drug development advances (that he's allowed to talk about). If you have questions about FSHD research, now's your chance to get them answered! Join host Tim Hollenback on YouTube on the 2nd Tuesday of every month. Call Tim at 414-375-2561 to share your thoughts,…
Find out more »FSHD 360 University of Florida
Virtual conference Meet the outstanding clinicians and researchers at the University of Florida Gainesville, one of the newest members of the FSHD Clinical Trial Research Network. Get answers to your questions about your health, genetic counseling and testing, physical and occupational therapy, and much more. Learn about cutting-edge research at UF as well as promising advances in FSHD therapies. Interested in making an appointment or volunteering for ongoing research studies? We can help you. And don't miss out on the…
Find out more »Colorado re:Connect
Sunday June 13, 2021 12:00pm - 3:00pm MT Central Park East Picnic Shelter: 9196 M.L.K. Jr Blvd, Denver, CO 80238 Please join us on June 13th for a Luau/Hawaiian BBQ as we re-Connect as a Colorado Chapter! --> Facilities are 100% accessible and permanent restrooms are on site. --> We will provide lunch, drinks and lawn games! --> BYO beer and wine, as long as it is not in a glass container. --> Families welcome! Please RSVP below by June 5th.…
Find out more »Wellness Hour (Virtual Meeting) – Personal transportation
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). Last month we all enjoyed a very informative and lively discussion about travel, dealing with air lines, hotels, and damaged power wheelchairs. By popular demand, we will continue on this topic and expand it to travel for people who are still walking as well as to local…
Find out more »FSHD University: Clinical trials 101
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT With Tahseen Mozaffar, MD, chair of neurology at the University of California Irvine. Learn about clinical trials, the scientific process by which researchers determine whether a new therapy is safe, works biologically as expected, and, most importantly, can improve outcomes for patients. In addition, trial sponsors need to navigate a complex web of regulatory rules set by the FDA in the U.S. (and European Medicines…
Find out more »Pacific Northwest Chapter Sip and Share
Pacific Northwest Sip and Share – Saturday, June 19, 2021 3:00-4:30pm PT JOIN THE ZOOM MEETING HERE It’s been a while, and we miss seeing everyone! Please join us for a fun virtual gathering of the Pacific Northwest chapter on Saturday, June 19th. for a "Sip and Share" and Virtual Art Show. Meeting attendees can mix their own drinks and then "visit" the are show where FSHD Society members share a story about submitted art pieces. We hope to “see”…
Find out more »Utah Re: Connect
Utah Re: Connect Saturday, June 19, 2021 Sugar House Park 1330 2100 S, Salt Lake City, UT 84106 6:00pm-8:00pm MT Please join us for a Family Celebration/Picnic! This will be a great opportunity to Re:Connect and ramp-up for the Walk & Roll. Dinner will be catered by a food truck. We will have live music, lawn games and lost of socializing. Celebrating that we can see each other! We hope you can join us! ~Allison Calder, Utah Chapter Director
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…
Find out more »Atlanta Chapter Watch Party for World FSHD Day
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, 1110 Hammond Dr, Suite 35, Sandy Springs GA 30328. There is a great view of the King & Queen buildings from their patio. We plan…
Find out more »28th Annual International Research Congress Day 1
The FSHD Society’s annual FSHD International Research Congress is the premier global conference exclusively focused on facioscapulohumeral muscular dystrophy (FSHD) research. World renowned clinicians, medical researchers, pharmaceutical industry leaders and basic scientists present and discuss new developments, reinforce collaborative efforts, facilitate new initiatives, and coordinate research and clinical activities. With the recent advances in FSHD research and clinical advances, this conference has become catalytic in translating ideas into potential therapies. Our 2020 congress drew over 280 attendees. For more information…
Find out more »28th Annual International Research Congress Day 2
The FSHD Society’s annual FSHD International Research Congress is the premier global conference exclusively focused on facioscapulohumeral muscular dystrophy (FSHD) research. World renowned clinicians, medical researchers, pharmaceutical industry leaders and basic scientists present and discuss new developments, reinforce collaborative efforts, facilitate new initiatives, and coordinate research and clinical activities. With the recent advances in FSHD research and clinical advances, this conference has become catalytic in translating ideas into potential therapies. Our 2020 congress drew over 280 attendees. For more information…
Find out more »Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET 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 restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
Find out more »South Carolina Virtual Meeting
We hope you'll join us for the upcoming South Carolina Chapter virtual meeting! Our gatherings are informal, and we welcome new friends! Please stay tuned for updates as we put our agenda together - and if there's a topic you want us to cover, please let us know. Join the meeting at THIS LINK! I look forward to "seeing" you all soon! -Frank Hanley, Chapter Director SouthCarolinaChapter@fshdsociety.org
Find out more »Wellness Hour (Virtual Meeting) – Personal transportation
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). Last month we all enjoyed a very informative and lively discussion about travel, dealing with air lines, hotels, and damaged power wheelchairs. By popular demand, we will continue on this topic and expand it to travel for people who are still walking as well as to local…
Find out more »New England Wellstone Update Meeting
New England Wellstone Update meeting, Tuesday July 13th at 5pm ET. We will be joined by Dr. Lawrence Hayward of the UMass Wellstone Center. He will provide research updates from the lab, and also summarize the news presented at the June 2021 FSHD Society International Research Congress. There will be plenty of time for Q&A, so please feel free to bring your questions! This meeting will be held virtually – we hope to “see” you there!
Find out more »FSHD Society Radio
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on YouTube on the 2nd Tuesday of every month. Call Tim at 414-375-2561 to share your thoughts, or post questions and comments in the YouTube comments section. You can also watch the recording on Facebook or access the podcast on most any streaming channel. Mark your calendar. Invite your friends to a listening party and chat with fellow YouTube viewers in the…
Find out more »FSHD University: Dynamic Sitting
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT We’ve all heard how important a well-tailored exercise program is for people with FSH muscular dystrophy. This is easier said than done, especially if you have difficulty standing up or worry about falling during exercise. In today’s webinar, Dr. Nikia Stinson discusses upper body weakness and pain that are frequently experienced by people with FSHD and describes exercises that can be done from a seated…
Find out more »Pacific Northwest Re: Connect
Pacific Northwest Re: Connect Pacific Bonzai Museum 2515 S 336th St, Federal Way, WA 98003 Sunday, July 18, 2021 1:30 pm - 4:00 pm PT Join us in the courtyard of the Pacific Bonzai Museum for a chance to reconnect with old friends and make some new ones. Light refreshments served, great conversation, and a chance to stroll the beautiful gardens. We look forward to Re:Connecting! ~Susie Kanewske, Pacific Northwest Chapter Director ~Selina Lai, Pacific Northwest Walk & Roll Leader
Find out more »Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET 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 restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
Find out more »Wellness Hour (Virtual Meeting) – Personal transportation
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). Last month we all enjoyed a very informative and lively discussion about travel, dealing with air lines, hotels, and damaged power wheelchairs. By popular demand, we will continue on this topic and expand it to travel for people who are still walking as well as to local…
Find out more »FSHD Society Radio
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on YouTube on the 2nd Tuesday of every month. Call Tim at 414-375-2561 to share your thoughts, or post questions and comments in the YouTube comments section. You can also watch the recording on Facebook or access the podcast on most any streaming channel. Mark your calendar. Invite your friends to a listening party and chat with fellow YouTube viewers in the…
Find out more »Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET 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 restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
Find out more »Wellness Hour (Virtual Meeting) – Personal transportation
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). Last month we all enjoyed a very informative and lively discussion about travel, dealing with air lines, hotels, and damaged power wheelchairs. By popular demand, we will continue on this topic and expand it to travel for people who are still walking as well as to local…
Find out more »FSHD Society Radio
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on YouTube on the 2nd Tuesday of every month. Call Tim at 414-375-2561 to share your thoughts, or post questions and comments in the YouTube comments section. You can also watch the recording on Facebook or access the podcast on most any streaming channel. Mark your calendar. Invite your friends to a listening party and chat with fellow YouTube viewers in the…
Find out more »Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET 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 restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
Find out more »South Carolina Chapter Meeting
Please Save-the-Date for our Fall South Carolina Chapter meeting! Our gatherings are informal, and we welcome new friends! Please stay tuned for updates as we put our agenda together - and if there's a topic you want us to cover, please let us know. Join the meeting at THIS LINK! I look forward to "seeing" you all soon! -Frank Hanley, Chapter Director SouthCarolinaChapter@fshdsociety.org
Find out more »CT Connections
Please join us for our quarterly virtual chapter meeting! We welcome new friends, so please feel free to dial in from anywhere. We look forward to "seeing"/meeting you soon! -Kathy Senecal, Chapter Director JOIN THE MEETING HERE!
Find out more »Wellness Hour (Virtual Meeting) – Personal transportation
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). Last month we all enjoyed a very informative and lively discussion about travel, dealing with air lines, hotels, and damaged power wheelchairs. By popular demand, we will continue on this topic and expand it to travel for people who are still walking as well as to local…
Find out more »FSHD Society Radio
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on YouTube on the 2nd Tuesday of every month. Call Tim at 414-375-2561 to share your thoughts, or post questions and comments in the YouTube comments section. You can also watch the recording on Facebook or access the podcast on most any streaming channel. Mark your calendar. Invite your friends to a listening party and chat with fellow YouTube viewers in the…
Find out more »Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET 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 restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
Find out more »Western PA Drum & Roll
Please mark your calendars: The 2021 Western PA Drum & Roll to Cure FSHD has been scheduled! We hope to see you on Saturday, November 6th, 2021! Event information can be found here: https://p2p.onecause.com/drumandroll Please reach out to the Chapter Director, Mark Christman, with any questions! He can be reached at WesternPAChapter@fshdsociety.org We look forward to seeing you on the 18th!
Find out more »Wellness Hour (Virtual Meeting) – Personal transportation
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). Last month we all enjoyed a very informative and lively discussion about travel, dealing with air lines, hotels, and damaged power wheelchairs. By popular demand, we will continue on this topic and expand it to travel for people who are still walking as well as to local…
Find out more »FSHD Society Radio
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on YouTube on the 2nd Tuesday of every month. Call Tim at 414-375-2561 to share your thoughts, or post questions and comments in the YouTube comments section. You can also watch the recording on Facebook or access the podcast on most any streaming channel. Mark your calendar. Invite your friends to a listening party and chat with fellow YouTube viewers in the…
Find out more »Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET 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 restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
Find out more »Wellness Hour (Virtual Meeting) – Personal transportation
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). Last month we all enjoyed a very informative and lively discussion about travel, dealing with air lines, hotels, and damaged power wheelchairs. By popular demand, we will continue on this topic and expand it to travel for people who are still walking as well as to local…
Find out more »FSHD Society Radio
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on YouTube on the 2nd Tuesday of every month. Call Tim at 414-375-2561 to share your thoughts, or post questions and comments in the YouTube comments section. You can also watch the recording on Facebook or access the podcast on most any streaming channel. Mark your calendar. Invite your friends to a listening party and chat with fellow YouTube viewers in the…
Find out more »Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET 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 restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
Find out more »FSHD Society Radio
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on YouTube on the 2nd Tuesday of every month. Call Tim at 414-375-2561 to share your thoughts, or post questions and comments in the YouTube comments section. You can also watch the recording on Facebook or access the podcast on most any streaming channel. Mark your calendar. Invite your friends to a listening party and chat with fellow YouTube viewers in the…
Find out more »FSHD Society Radio
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on YouTube on the 2nd Tuesday of every month. Call Tim at 414-375-2561 to share your thoughts, or post questions and comments in the YouTube comments section. You can also watch the recording on Facebook or access the podcast on most any streaming channel. Mark your calendar. Invite your friends to a listening party and chat with fellow YouTube viewers in the…
Find out more »2022 FSHD Connect
FSHD Connect is the FSHD Society's flagship educational conference. Held every two years, it is the world's biggest networking event for FSHD, bringing together hundreds of individuals and families living with FSH muscular dystrophy, clinicians, and researchers for two days of immersive learning and workshops. You'll find out about the latest research, drug development, and clinical trials, as well as a wealth of news you can use, from managing symptoms to navigating the challenges of daily life. You'll be meeting…
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