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Home Modifications Show & Tell (Hosted by the Columbus and Greater Philadelphia Chapters)
Home Modifications Show & Tell (hosted by the Columbus & Greater Philadelphia Chapters) Saturday, Feb. 27th, 10am – 11:30am ET https://us02web.zoom.us/j/84906688228?pwd=WnpickYxbW42TUd5TVBGMkVhSVBVQT09 Getting ready to do some home renovations? Need some fresh ideas? Don’t miss this “Show and Tell”-style meeting! We will be joined by savvy FSHer’s from across the country to share their own renovation successes, and everyone is welcome to contribute! There will be plenty of time for open discussion, so bring your questions, challenges, and ideas. If you…
Find out more »Rare Disease Day
The FSHD Society participates in the annual Rare Disease Day by encouraging our community to share their stories over social media. You can use words, photos, memes, or video to tell your FSHD story. Use whatever medium you're most comfortable with. The point is to share it over social media, tag your friends, ask them to share or re-post it to spread the word as widely as possible. Visit our Rare Disease Day toolkit for ideas, images to use, and…
Find out more »Pacific Northwest Virtual Chapter Meeting
Sunday, February 28, 2021 12:00pm-1:00pm Pacific Time We hope you’ll join us for the upcoming Pacific Northwest Chapter virtual meeting! We will be welcoming the New Year with our theme "Activate!" We will do a recap of our Leadership Summit, important dates to put on your calendar for 2021, and further planning ideas! Join the meeting at THIS LINK! I look forward to “seeing” you all soon! -Susie Kanewske, Pacific Northwest Chapter Director
Find out more »Connecticut Connections
Please join us for our quarterly virtual chapter meeting! We welcome new friends, so please feel free to dial in from anywhere. This month, we will be discussing the upcoming activities for CT Connections, including a fundraiser in September, and a gathering at Hospital for Special Care’s Manes and Motions Therapeutic Riding Center in late August for a picnic and fun day for the family. We look forward to "seeing"/meeting you soon! -Kathy Senecal, Chapter Director JOIN THE MEETING HERE!
Find out more »Ontario Virtual Chapter Meeting
Saturday, March 6th 11am-12pm ET Join Zoom Meeting: https://us02web.zoom.us/j/84499096601?pwd=cXlHLzBLQXN1S0Q2NDFkRUtLU0Fjdz09 Meeting ID: 844 9909 6601, Passcode: FSHD Or by phone: 778 907 2071, Meeting ID: 844 9909 6601 Please join us for a Virtual Chapter Meeting! We will get to know one another, discuss goals/wants/needs for our Chapter, and take a look ahead at plans for 2021! Hope to "see" you there! ~Carrie Wilkinson, Ontario, Canada Chapter Director
Find out 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, talk about what works for you, and feel validated and supported in whatever you may be going through. At last month's meeting, we had a…
Find out more »FSHD Society Radio with Carlos Romero
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Our guest this evening is Carlos Romero, who has amazed us over the past several years by becoming a national paraclimbing champion and being featured in People magazine for losing 225 pounds following his FSHD diagnosis in 2012. He recently started his own podcast, Crappy Comics, a "podcast about comedy and courage." We can't wait to catch up with him! Join host Tim Hollenback on…
Find out more »Colorado Virtual Chapter Meeting
Saturday, March 13, 2021 11:00am-1:00pm Mountain Time Join Zoom Meeting: https://ucdenver.zoom.us/j/93149824739, Meeting ID: 931 4982 4739 One tap mobile: +13462487799, 93149824739# Or by phone: +1 346 248 7799, Meeting ID: 931 4982 4739 In this meeting, we want to hear from all of YOU about your creative life hacks, adaptations or modifications, products, and/or services that have helped you in your journey with FSHD. You may want to share a video showing off your technique for reaching something on a top shelf, share photos…
Find out more »Virtual Chapter Meeting with Utah, Arizona and Idaho
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 FSHD DME options Adaptive sports/programs We look forward to "seeing" you there! ~Allison Calder, Utah Chapter Director ~Ally Roets, Arizona Chapter Director ~Minette Hale, Idaho…
Find out more »San Diego Virtual Chapter Meeting
Tuesday, March 16, 2021 6:00pm-7:30pm Pacific Time Communicating in Full Color; working together to keep the lines of communication open. Communication can be tricky; the last year has made it even more challenging. Join us for this interactive workshop aimed at helping us identify keys to greater communication. Presented by Leigh Reynolds, Senior Director of Marketing and Community Engagement. Hope to "see" you there! ~Amy Bekier, San Diego Chapter Director
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FSHD University: Managing difficult emotions and experiences
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT In this month’s FSHD University webinar, psychologist David Younger will teach you about one of his favorite mindfulness practices. It will help to demystify the concept of mindfulness so you can put it into action in your daily life in a clear step-by-step process. He will provide a handout and guided practice audio to anyone who is interested. David Younger, PhD, is a clinical psychologist based in…
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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 »Southeast Chapters Meeting with Jamshid Arjomand
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. Jamshid Arjomand! Dr. Arjomand will cover some genetic biology, give a research update, and discuss how different potential therapies could attack the problem. Come with…
Find out more »South Carolina Chapter 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)
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, talk about what works for you, and feel validated and supported in whatever you may be going through. If you are interested, please register by…
Find out more »FSHD Radio – Jams’ Session with Jamshid Arjomand, PhD, FSHD Society Chief Science Officer
Jams' Session with Jamshid Arjomand, PhD, Chief Science Officer, FSHD Society 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Our guest tonight is the FSHD Society's Jamshid Arjomand, PhD, chief science officer and our go-to source for what's happening in FSHD research. What are the most intriguing recent discoveries? How many companies are now working on treatments, and what are their approaches? How soon might we see new clinical trials? Ask Jamshid! Join…
Find out more »FSHD University: A researcher’s journey into FSHD
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Learning, discovering and testing: a researcher’s journey into FSHD Angela Lek, PhD, will share her scientific journey as an FSHD researcher. Her work is focused on understanding the molecular circuits Dr. Angela Lek that are perturbed in response to DUX4 misexpression in muscle cells. Her lab performed a genetic screen to systematically turn on and off every human gene in an attempt to identify 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)
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, talk about what works for you, and feel validated and supported in whatever you may be going through. If you are interested, please register by…
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: 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 »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 »Connecticut 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 »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 »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, talk about what works for you, and feel validated and supported in whatever you may be going through. If you are interested, please register by…
Find out more »FSHD University: Jams’ Session – FSHD Science Update
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Join Jamshid Arjomand, PhD, chief science officer of the FSHD Society, for an insider’s update of FSHD research. What’s the most interesting news coming out of basic discovery labs? Which companies are working on FSHD therapies? What’s the scientific basis for their approach, and how far along are they? What are the obstacles to successful clinical trials, and what can we, as the FSHD community,…
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)
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, talk about what works for you, and feel validated and supported in whatever you may be going through. If you are interested, please register by…
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 »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)
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, talk about what works for you, and feel validated and supported in whatever you may be going through. If you are interested, please register by…
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)
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, talk about what works for you, and feel validated and supported in whatever you may be going through. If you are interested, please register by…
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)
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, talk about what works for you, and feel validated and supported in whatever you may be going through. If you are interested, please register by…
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)
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, talk about what works for you, and feel validated and supported in whatever you may be going through. If you are interested, please register by…
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)
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, talk about what works for you, and feel validated and supported in whatever you may be going through. If you are interested, please register by…
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…
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