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CANCELLED: November Connecticut Connections: See you in December!

Connecticut Virtual Meeting https://zoom.us/j/442453571, Or Telephone: 669-900-6833, Meeting ID: 442 453 571, CT

Kathy Senecal and Sarah Pashe invite you to come support, empower, share and network with the FSHD community. This is a monthly meeting that will take place on the first Thursday of each month via Zoom web conference. Patients, caregivers and family members welcome! JOIN US from your computer or tablet! If needed, passcode is:... Read More »

Kansas City FSHD Family Day

Kansas City Kansas City, MO

Virtual FSHD FAMILY DAY Join KUMC & the FSHD Society for our virtual FSHD Family Day event this November. This event is for patients and family members to connect and learn more about advances in FSHD research. November 7th at 9:00am - 2:00pm CST Because it is virtual, we welcome anyone from anywhere to join... Read More »

Gathering at FSHD Connect

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 »

FSHD Society Radio – Mindfulness with Jen Egert

Facebook Live

9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. This week we welcome back Dr. Jen Egert, psychologist and mindfulness coach. Just listening to her will calm you down. She offers wonderful insights into our lives and minds. Mark your... Read More »

Colorado Virtual Chapter Meeting

Denver Colorado CO

Saturday November 14th, 11:00 am - 1:00 pm MT Virtual Zoom meeting: https://ucdenver.zoom.us/j/93149824739 Please mark your calendars to join us for our next support group meeting where we will discuss together the emotional and relational challenges of living with FSHD. In July we had the opportunity to hear from licensed social worker Mary O’Hara about... Read More »

Mid-Atlantic Virtual Chapter Meeting

Maryland MD

Zoom Link Here It’s been a while! We miss seeing you so much, so we’d like to invite you to a year-end Chapter meeting on Saturday, Nov. 14th at 12pm ET. We hope you can join us!! Our preliminary agenda includes: A little daydreaming: What’s your favorite place you’d traveled, or hope to travel next? Feel free... Read More »

New England Chapter Meeting

Boston Boston, MA

November 15, 12:00PM ET Hey, New Englanders! It’s been a while since we’ve been able to see each other, and we miss you! We know there are some new folks out there as well that we want to welcome into our community. Until we can get together in-person again, we’d love for you to join... Read More »

Recurring

FSHD Society Radio

Facebook Live

9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. Mark your calendar. Invite your friends to a listening party and chat with fellow Facebook listeners in the comments section. It’s a great community event! Whether you just need someone to... Read More »

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Webinar – The Utah FSHD Study

Zoom Web Conference

Russell Butterfield, MD PhD November 19th, 2020: 1:00PM ET This month's webinar shines a spotlight on an ambitious FSHD genetic study led by Russell Butterfield, MD, PhD and Bob Weiss, PhD of the University of Utah. One of the landmark studies in FSHD involved a 1950 publication involving more than 1200 members of an extended... Read More »

Chicago Virtual Chapter Meeting

Chicago IL

Chicago Chapter Meeting Saturday, November 21, 2020 9:00am-10:30am Central Time Join Here Please join us for a casual Chapter Coffee Hour! Bring your favorite mug and join us over Zoom for some friendly catch-up, FSHD Society updates, and maybe even a trivia question or two. At our last chapter meeting this spring, Elan (a high... Read More »

NYC Virtual Chapter Meeting

New York City New York City, NY

Saturday November 21st, 12p-1p ET Join Zoom Meeting from your computer or tablet: https://us02web.zoom.us/j/89829813766?pwd=MTNkYlFIdHgxSGRUVnpENHJFZkhpdz09 Meeting ID: 898 2981 3766, Passcode: FSHD Or by phone 646-558-8656, Meeting ID: 898 2981 3766   We are long overdue for a gathering! While COVID-19 may keep us from getting together in person, we can still gather virtually. Join your... Read 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... Read More »

FSHD Society Radio

Facebook Live

9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. As this is the eve before Thanksgiving, we thought it would be fitting to talk about gratitude. What are you thankful for? Call Tim at 414-375-2561 to share your thoughts, or post... Read More »

2020 Radiothon Giving Tuesday
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FSHD Society Radiothon

Facebook Live

#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 »

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 »

Recurring

FSHD Connecticut Connections

Connecticut Virtual Meeting https://zoom.us/j/442453571, Or Telephone: 669-900-6833, Meeting ID: 442 453 571, CT

Kathy Senecal and Sarah Pashe invite you to come support, empower, share and network with the FSHD community. This is a monthly meeting that will take place on the first Thursday of each month via Zoom web conference. Patients, caregivers and family members welcome! JOIN US from your computer or tablet! If needed, passcode is:... Read More »

All-PA Year-End Chapter Meeting

Philadelphia PA

All-PA Year-End Chapter Meeting Saturday, December 5, 2020 10:00am-11:00am ET Join Here It’s been a long time since we’ve seen each other, and we miss you! We hope you will join us for a year-end meeting with the Greater Philadelphia and Western PA Chapters, bringing the entire state-wide community together! We are planning some fun... Read More »

Greater Toronto Area Virtual Meeting

toronto Toronto

Greater Toronto Area December 5th 11:00am-12:00pm ET Please join us for a VIRTUAL gathering of local FSHD families and friends in the Greater Toronto Area. Let's re-connect with old friends, and get to know new friends! While COVID-19 prevents us from meeting in person, we can meet virtually over zoom in hopes that one day... Read More »

Arizona, Idaho, Utah and Pacific Northwest Virtual Year-End Party

utah salt lake city, UT

Virtual Year-End Party! Saturday December 5, 2020 2:00pm - 3:30pm Mountain Time Join Us Here We’re trying something new, and we hope you’ll join us: You’re invited to the Arizona, Idaho, Pacific Northwest and Utah Virtual Year-End Party!! Bring your festive spirit: ugly sweaters, party hats, punny jokes, and fun Zoom backgrounds are all highly... Read More »

California Virtual Year-End Meeting and Celebration

Los Angeles Los Angeles

Holiday Meeting! Sunday, December 6, 2020 4:00pm – 5:30pm Pacific Time Join Us Here You’re invited to the California Virtual Year-End Holiday Meeting!! Our Bay Area, San Diego, Los Angeles, and Sacramento Chapters of the FSHD Society are joining for our Holiday Meeting! This will be a chance to visit with friends – and meet new... Read More »

FSHD Society Radio – Mental Health conversation

Facebook Live

9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. Call Tim at 414-375-2561 to share your thoughts, or post questions and comments in the Facebook comments section. Our guest this week is Missy Dixon, mental health counselor at the University... Read More »

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Webinar: COVID-19 Update

Zoom Web Conference

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 »

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 »

CenTex Year-End Virtual Meeting and Holiday Social

Dallas Dallas, TX

Year-End Virtual Meeting and Holiday Social The CenTex Chapter of the FSHD Society welcomes all of our fellow Texas FSHD family and friends to a virtual year-end meeting, and Holiday ‘social’! WHEN: Saturday, December 12th 2-3:30 CT WHERE: Via Zoom WHAT: Hosted by Rachel Sartin, CenTex Chapter Director. FSHD UPDATES: Mark Stone, CEO of the FSHD Society,... Read More »

Gathering at FSHD Connect

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 »

FSHD Society Radio – Fitness conversation

Facebook Live

9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Mitch Wade and Bill Herzberg Join host Tim Hollenback on Facebook Live every Wednesday evening. Call Tim at 414-375-2561 to share your thoughts, or post questions and comments in the Facebook comments section. In our final episode for 2020, we are... Read More »

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Webinar – Bracing for spine and knee issues

Zoom Web Conference

Webinar sponsored by Allard This month's webinar addresses two frequently mentioned topics for the FSHD Community: knee hyperextension and spinal issues such as lordosis that result from the weakening of core muscles. Orthotic braces and supports can provide solutions for some individuals. Our speaker is Bob Meier (ABC CO #3818). Bob has been active in the... Read More »

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Sharegiver Hour

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 »

Connecticut Connections

Zoom Virtual Meeting

Hello All, I do hope this first email of the new year finds you and your loved ones healthy and safe. We are all hoping for better days in 2021. One way to help make that happen is to join us for our first meeting of this new year! I’m delighted to announce our guest... Read More »

Gathering at FSHD Connect

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 »

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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 »

Colorado Virtual Chapter Meeting

Denver Colorado CO

Colorado New Year Kick-Off Saturday, January 16, 2021 11:00 am - 1:00 pm, MST https://ucdenver.zoom.us/j/93149824739   Join us after the holidays as we kick-off the new year with a fun, social gathering! Put on your game hats and come ready to chat, connect, and relax with your fellow chapter members. We look forward to "seeing"... Read More »

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Sharegiver Hour – Mindfulness with Jen Egert

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 »

Gathering at FSHD Connect

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 »

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FSHD Society Radio on the Sharegiver Hour

You Tube

9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Sue Drescher Join host Tim Hollenback on YouTube on the 2nd Tuesday of every month. This month's episode features Sue Drescher, co-director of the Society's Bay Area chapter and co-moderator of the monthly Sharegiver Hour, a virtual support group for... Read More »

South Carolina Chapter meeting

Zoom 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... Read More »

Western PA Virtual Chapter Meeting

Pittsburgh Pittsburgh, PA

Western PA Chapter Meeting Saturday, Feb. 13, 10-11am Eastern Time https://us02web.zoom.us/j/89429208171?pwd=YjBieXFHYkxkbWFQOWpLcVVTWmRGQT09 Please join us for the first Western PA Chapter meeting of the year! We will meet virtually this time, with hopes to meet in person again as soon as possible. This will be a casual, conversational meeting – we look forward to reconnecting with... Read More »

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FSHD University: Early-onset FSH muscular dystrophy

1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Early onset FSHD: How different is it? Tina Duong, MPT While individuals with FSH muscular dystrophy are typically diagnosed in the late teen or adult years, many recall having subtle symptoms during childhood that went unnoticed. However, an estimated 10%... Read More »

FSHD Family Day – University of Rochester

8:45 a.m. – 2:10 p.m. ET Virtual Meeting using Zoom Cloud Meeting An up close and personal opportunity to find out about exciting advances in research on FSHD treatments, along with essential information about staying in good shape. Learn what you can do to make a difference for yourself and for your community. Hosted by... Read More »

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Sharegiver Hour

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 »

Home Modifications Show & Tell (Hosted by the Columbus and Greater Philadelphia Chapters)

Philadelphia PA

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... Read More »

I am rare - twitter

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... Read More »

Pacific Northwest Virtual Chapter Meeting

Seattle, Washington Seattle, WA

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... Read More »

Connecticut Connections

Zoom Virtual Meeting

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... Read More »

Ontario Virtual Chapter Meeting

Ontario Ontario, Ontario

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... Read More »

Gathering at FSHD Connect

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 »

FSHD Society Radio with Carlos Romero

You Tube

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... Read More »

Colorado Virtual Chapter Meeting

Denver Colorado CO

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... 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 »

San Diego Virtual Chapter Meeting

San Diego San Diego, CA

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... Read More »

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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... Read More »

Bay Area Virtual Chapter Meeting

Bay Area Virtual San Francisco, CA

Bay Area Virtual Chapter Meeting Sunday, March 21, 2021 3pm-5pm PT Please join us Virtually LOG IN HERE The theme for our chapter meeting this time will be mobility challenges.  We hope to have special guests from University Nevada - Reno to discuss a research study they are doing that examines walking characteristics as a possible... Read More »

CenTex Virtual Chapter Meeting

Austin Austin, TX

Virtual Chapter Meeting Sunday, March 28, 2021 2:00 pm-4:00 pm Central Time Join Here via Zoom Please join us for the next virtual gathering of the CenTex chapter on Sunday, March 28th. We are looking forward to catching up with our friends and neighbors, and looking ahead to all that we have to be excited for... Read More »

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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. 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 »

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 »

North Carolina Virtual Chapter Meeting

North Carolina NC

North Carolina Virtual Chapter Meeting Saturday, April 3, 2021 2:00pm-3:00pm Eastern Time JOIN THE ZOOM MEETING HERE It’s been a while, and we miss seeing everyone! Please join us for the next virtual gathering of the North Carolina chapter on Saturday, April 3rd. We are looking forward to catching up with our friends and neighbors, and... Read More »

South Carolina Chapter Meeting

Zoom 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... Read More »

Dakotas & Minnesota Virtual Chapter Launch

North Dakota Fargo, ND

Saturday, April 10, 2021 10:00am-11:30pm Central Time JOIN THE ZOOM MEETING HERE Please mark your calendars for our first official Chapter meeting. We are excited to officially launch the Dakotas and Minnesota Chapters and we want you there. We will get to know each other, meet our regional director, Leigh Reynolds, and hear from the... Read More »

NYC Area Virtual Chapter Meeting

New York City New York City, NY

Saturday, April 10, 2021 11:30pm-12:30pm Eastern Time JOIN THE ZOOM MEETING HERE Please join us for our first Chapter meeting of 2021! Virtual Lunch Date: Saturday April 10th, 11:30a-12:30p ET Meet Peter Gangemi, our new NYC-area Chapter Director Get updates from the FSHD Society Look ahead to what’s happening and planning ahead for 2021 Bring... Read More »

Gathering at FSHD Connect
Featured Featured

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 »

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FSHD Radio – Haviva Ner-David, author of Hope Valley

You Tube

9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT LISTEN HERE Note: our original program featuring the FSHD Society's Jamshid Arjomand, PhD, chief science officer, has been postponed until later this year. Instead, we are delighted to welcome Rabbi Haviva Ner-David, a long-time member of the FSHD Society whose... Read More »

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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... Read More »

St. Louis Virtual Chapter Meeting

St. Louis MO

Tuesday, April 27, 2021 6:30 - 8:00pm CT JOIN THE ZOOM MEETING HERE Please join us for the next virtual gathering of the St. Louis chapter on Tuesday, April 27th. Michelle Mellion from Fulcrum Therapeutics will be with us to present on the topic of MRIs. We are looking forward to catching up with our... Read More »

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Sharegiver Hour

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 »

Ontario Virtual Chapter Meeting

Ontario Ontario, Ontario

Ontario Chapter Meeting – Saturday May 1st, 11:00am ET. Zoom Information: https://us02web.zoom.us/j/85980460842?pwd=RnJzam5WYlY1VUt6SFlscXlPcWEwQT09 Meeting ID: 859 8046 0842, Passcode: 685642 Or by phone: 646-558-8656, Meeting ID: 859 8046 0842 We will have a guest speaker, Krista Holdsworth, BSc., CO(c), FCBC joining us on May 1, 2021. Krista has been a certified orthotist since 1988, after passing the... Read More »

Gathering at FSHD Connect
Featured Featured Recurring

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). The Wellness Hour is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers,... Read More »

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FSHD Society Radio with Lori Brant, personal coach

You Tube

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... Read More »

East TN Virtual Chapter Meeting

East Tennessee knoxville, TN

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... Read More »

Early-Onset Virtual Chapter Meeting

Arizona AZ

Join our Early-onset FSHD chapter! Early-Onset Virtual Chapter Launch Meeting Wednesday, May 19, 2021 2:30pm-3:30pm Pacific 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... Read More »

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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... Read More »

Chicago Virtual Chapter Meeting

Chicago IL

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... Read More »

CenTex Virtual Chapter Meeting

Austin Austin, TX

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?... Read More »

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Sharegiver Hour

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 »

Tampa and Southwest Florida Virtual Chapter Meeting

Tampa

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... Read More »

FSHD University – The MOVE Study

Zoom Virtual Meeting

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... Read More »

New England Connections

Zoom Virtual Meeting

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... Read More »

Bay Area Virtual Chapter Meeting

Bay Area Virtual San Francisco, CA

Bay Area Virtual Chapter Meeting Sunday, June 6, 2021 1:00pm-3:00pm Pacific Time Please join us Virtually LOG IN HERE Please join us for the next virtual gathering of the Bay Area Chapter, on Sunday, June 6th, 1pm PT! This will be an informal meeting, and everyone is welcome to share updates, ask questions, and bring your... Read More »

Western PA Virtual Chapter Meeting

Western PA Virtual Pittsburgh, PA

Western PA Meeting Tuesday, June 8, 2021 6:00pm Eastern Time Join Us Virtually Here Have a question about the genetics behind FSHD? Curious about the state of research in the FSHD field? Please join us on Tuesday, June 8th for a Q&A meeting with the FSHD Society’s Chief Science Officer, Dr. Jamshid Arjomand! Dr. Arjomand will... Read More »

FSHD Society Radio -small
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FSHD Society Radio – Jam Sesh with Jamshid

You Tube

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... Read More »

FSHD 360 University of Florida

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... Read More »

North Carolina Virtual Chapter Meeting

North Carolina NC

NC Virtual Chapter Meeting RESCHEDULED: PLEASE NOTE NEW DATE & TIME!! Saturday, June 12th, 4pm ET | 3pm CT | 2pm MT | 1Pm PT Via Zoom: https://us02web.zoom.us/j/88629883230?pwd=ekd4K3hlZTFPbkNYR3lnd1c2WHZXZz09 Please join us for the next virtual gathering of the North Carolina Chapter, on Saturday, June 12th, 4pm ET! This will be an informal meeting, and everyone... Read More »

Colorado re:Connect

Central Park East Picnic Shelter 9196 MLK Jr. Blvd, Denver, CO

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... Read More »

Gathering at FSHD Connect
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Wellness Hour (Virtual Meeting) – Transitions

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 »

Gathering at FSHD Connect
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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). The Wellness Hour is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers,... Read More »

New Hampshire Virtual Support Group Meeting

New Hampshire NH

NH Virtual support group meeting Tuesday, June 15th, 6pm ET Zoom: https://us02web.zoom.us/j/87429809026?pwd=TGtieXVCRHJMdXVZbldaVHZyUjQ1Zz09 You’re invited to a virtual support group meeting for our members in NH! This will be an informal gathering, where we will have a chance to get to know our neighbors, and hopefully meet some new ones. We look forward to “seeing” you... Read More »

FSHD University Logo
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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... Read More »

Utah Re: Connect

Canyon Rim Park East Pavillion 3100 S Grace Street, Millcreek, UT

Utah Re: Connect Friday, June 18, 202 Canyon Rim Park East Pavilion, 3100 S Grace St, Millcreek, UT 84106 6:00pm-8:30pm 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... Read More »

Pacific Northwest Chapter Sip and Share

Seattle, Washington Seattle, WA

The Pacific Northwest Chapter is inviting you to their Sip & Share Virtual Art Show Saturday, June 19th 3:00-4:30 Pacific/4:00-5:30 Mountain/5:00-6:30 Central/6:00-7:30 Eastern  Two virtual venues! - Mixology with Susie - Share & Show Art with Selina If you have art to share, please submit it HERE. Also please check out Mixology with Susie. She... Read More »

World FSHD Day

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... 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 »

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... Read More »

FSHD University Logo
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FSHD University – Fulcrum Phase 2b Trial Results

4:00 PM ET | 3:00 PM CT | 2:00 PM MT | 1:00 PM PT The team from Fulcrum Therapeutics will be sharing the data from its Phase 2b clinical trial of Losmapimod, a treatment for FSH muscular dystrophy that is intended to stop the expression of the DUX4 gene and slow the progression of... Read 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... Read More »

Virginia Chapter Virtual Launch!

Virginia VA

Tuesday, June 29th, 6pm ET | 5pm CT | 4pm MT | 3pm PT Zoom: https://us02web.zoom.us/j/83158085309?pwd=dExxamhESnNzc29qR3RyT3JELzNkZz09 Please join us in celebrating the launch of the Virginia Chapter! We are thrilled to see this new chapter take shape. This effort is being led by two amazing volunteer leaders: Jodie Howell is a certified clinical research nurse... Read More »

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Sharegiver Hour

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 »

Western PA Chapter Meeting: Drum & Roll Launch!

Western PA Virtual Pittsburgh, PA

Thursday, July 1st, 7pm ET | 6pm CT | 5pm MT | 4pm PT Zoom: https://us02web.zoom.us/j/81914065823?pwd=cVc3RFZYMS8zV25BckRsOTc3dEh3Zz09 Please join us for the official launch meeting for the Drum & Roll fundraiser on Thursday, July 1st, at 7pm ET!! We plan to debut and demo our fundraising software, and give our group some insider tips and industry... Read More »

Northeast Florida Virtual Chapter Launch

NE Florida Virtual Jacksonville, FL

Northeast Florida Virtual Chapter Launch! Saturday, July 10th, 1pm ET | 12pm CT | 11am MT | 10am PT Zoom: https://us02web.zoom.us/j/86413001263?pwd=ZEFwRzBSb2NNZ3RaTC9WcERtcXdHUT09 We hope you will be able to join us for the official launch of the Northeast Florida Chapter! Our first meeting will be held virtually, with hopes to gather together in person soon. This... Read More »

Idaho Talent Fest to Cure FSH Muscular Dystrophy

Idaho Talent Fest

Nampa Civic Center 311 3rd St S, Nampa, ID

Announcing the First Annual Idaho Talent Fest! July 10, 2021 We are proud to host the first annual Idaho Talent Fest to Cure FSH Muscular Dystrophy on July 10th. This competition will not only spotlight and celebrate many talented individuals, but will also raise funds and awareness for those suffering from FSH Muscular Dystrophy. Don't... Read More »