Lighting the Way to a Cure

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 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 »

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 »

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 »

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 »

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 »

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 »

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 »

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 »

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 »

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 »

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 »

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 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 »

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 »

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

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 »

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 »

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

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 »

New England Wellstone Update Meeting

UMass Medical School Wellstone Center for FSHD 373 Plantation Street, Worcester, MA

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,... Read More »

South Carolina Virtual Meeting (RESCHEDULED!)

South Carolina SC

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 »

Pacific Northwest Re: Connect

Pacific Bonzai Museum 2515 S 336th St, federal way, WA

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... Read More »

Ontario Virtual Chapter Meeting

Ontario Ontario, Ontario

Saturday July 24th 10a-11:30a ET Time: Jul 24, 2021 10:00 AM Eastern Time (US and Canada) Join from your computer or tablet: https://us02web.zoom.us/j/88086370976?pwd=Qkp2amJTUkhzWVpUVVF6UXA3a1Z4Zz09 Meeting ID: 880 8637 0976, Passcode: 191212 Or by phone: 646-558-8656, Meeting ID: 880 8637 0976   Please join us for guest speaker: Dr. Hanns Lochmuller, Professor of Neurology at the University... Read More »

Connecticut Re:Connect

Riverview Waterfront 177 Roosevelt Drive, Seymour, CT

Connecticut Connections _______ Saturday, July 24, 2021 12:00pm-4:30pm Riverview Waterfront Cookout 177 Roosevelt Drive, Seymour, CT 06483 www.riverviewwaterfront.com The Connecticut Connections group will be hosting a picnic to celebrate everything we’ve accomplished in the last year. We’re so excited to see everyone in person again! Please note: this is an outdoor venue. Please RSVP by... Read More »

CenTex, SC and Dallas Virtual Meeting w/ Dr. Jamshid Arjomand

Texas TX

Please join the CenTex, South Carolina, and Dallas chapters in welcoming guest speaker Dr. Jamshid Arjomand, FSHD Society's Chief Science Officer! Tuesday, July 27th, 3pm PT | 4pm MT | 5pm CT | 6pm ET Zoom: https://us02web.zoom.us/j/83400800261?pwd=L2VGZzlzdEtJbHA4WEhjV2dDVk9OZz09 Have a question about the genetics behind FSHD? Curious about the state of research in the FSHD field?... Read More »

Virginia Chapter virtual meeting

Please join us via Zoom! We hope you can join us for the next meeting of the new Virginia Chapter! Our goal is to meet monthly, to get to know each other and support one another across the state. Our meetings are informal, and we would love to hear from you about what you’d like... Read More »

FSHD Masterclass (virtual course for clinicians)

THE LIVE COURSE HAS BEEN COMPLETED. THE RECORDED COURSE WILL BE AVAILABLE SOON AS A CME-ACCREDITED ONLINE COURSE. The FSHD Society is offering an online CME-accredited masterclass on facioscapulohumeral muscular dystrophy (FSHD). This course is of interest to any physician and allied health professional who sees adult and pediatric neuromuscular patients. We’d appreciate it if... Read More »

ArkLaTex Virtual Meet-and-Greet

Virtual Denver,

ArkLaTex Area August 12, 2021 6:00pm CT Join us HERE Thanks to everyone who responded to Jeff Anderson about getting a local group together here. Please join us for our initial “Meet-and-Greet” - - Thursday August 12th at 6pm CT! So, come and meet your neighbors! We are hoping to get an official FSHD Society... Read More »

Dakotas Chapter Meeting

Brandenburg Crew Real Estate Team Office 3369 45th Street S, Fargo, ND

Dakotas Chapter Meeting Sunday, August 15, 2021 Brandenburg Crew Real Estate Team Office 3369 45th Street S, Fargo, ND 58104 1:00pm CT Please join us as we get together for our first in-person meeting as a new FSHD Society chapter. We are participating in this year’s Walk & Roll to Cure FSHD and I’d love... Read More »

2021 UPIN Family Day at the Zoo!

Utah Hogle Zoo 2600 Sunnyside Ave. S, Salt Lake City, UT

The FSHD Society is happy to support the UPIN FAMILY Day at the Zoo! August 21st at 10:00am As long-time partners and supporters of the Utah Program for Inherited Neuromuscular Disorders at the University of Utah (UPIN), we are excited to announce their upcoming event. UPIN has decided to replace their traditional conference model with... Read More »

Virginia Chapter Virtual Meeting

Virginia VA

Virginia Chapter virtual meeting, with Dr. Nicholas Johnson Tuesday, August 24th, 2021 6pm ET | 5pm CT | 4pm MT | 3pm PT Via Zoom:  https://us02web.zoom.us/j/85293744362?pwd=ZG9rTnB2MmIrTjR5YU5BK2pna01jUT09 Please join us for the next meeting of the Virginia Chapter! We will be joined by Dr. Nicholas Johnson of Virginia Commonwealth University. He will provide updates on the... Read More »

Avidity Walk & Roll Gathering

Avidity Biosciences 10975 N Torrey Pines Rd., La Jolla, CA

SORRY FOR THE LATE NOTICE, EVENTS HAVE BEEN CANCELLED FOR TODAY!   1:15pm – 2:15pm PT | August 27, 2021 10975 N. Torrey Pines Rd. Suite 150 La Jolla, CA 92037 Thank you for being a part of the California Walk & Roll to Cure FSHD! It’s one state-wide effort, but there are multiple ways... Read More »

FSHD 360 University of Colorado

Douglas County Library – Parker Event Hall A&B, 20105 Mainstreet, Parker, CO

REGISTER NOW! Meet the outstanding clinicians and researchers at the University of Colorado, which joined the FSHD Clinical Trial Research Network last year. Dr. Matthew Wicklund and his team will answer your questions about your health, genetic counseling and testing, physical and occupational therapy, and much more. Learn about cutting-edge research at UC as well... Read More »

Bay Area Gathering at Stanford

Saturday, August 28, 2021 12:00pm - 3:00pm Pacific We hope that all of our chapter members can join us for an informal, in-person, outdoor gathering on Saturday, August 28, from Noon to 3PM at Stanford.    This gathering will have two purposes. One is to socialize in-person with each other with some refreshments for a little while. The... Read More »

New Hampshire Virtual Support Group

New Hampshire NH

Tuesday, August 31, 2021 6pm ET | 5pm CT | 4pm MT | 3pm PT Join Us Virtually Here   Please join us for the next meeting of the New Hampshire virtual support group! We are planning a casual, conversational meeting – so please feel free to bring your questions, ideas, and whatever is on... Read More »

2021 Chicago Walk & Roll to Cure FSHD!

Chicago IL

Please mark your calendars for the Virtual  2021 Chicago Walk & Roll! We will see you on Saturday, September 11, 2021 Please reach out to the Chapter Director, Dave Lukas, with any questions! He can be reached at ChicagoChapter@FSHDSociety.org. We look forward to seeing you on September 11th! *If you are comfortable we will be... Read More »

2021 Columbus Walk & Roll to Cure FSHD!

Coffman Park Pavillion 5200 Emerald Pkwy, Dublin, OH

Please mark your calendars for the 2021 Columbus Walk & Roll to Cure FSHD! We will see you on Saturday, September 11, 2021 Please reach out to the Walk Leader, Sue Aumiller, with any questions! She can be reached at ColumbusChapter@FSHDSociety.org We look forward to seeing you on September 11th!

2021 New England Walk & Roll to Cure FSHD!

Optum Building Rooftop 1325 Boylston Street, Boston, MA

Please mark your calendars for the 2021 New England Walk & Roll! Join us for a lunch celebration on the Optum Roofdeck from 11:00am - 2:00pm Please reach out to the Walk Leader, Lexi Pappas, with any questions! She can be reached at alexipappas19@gmail.com. We look forward to seeing you on September 11th!

2021 Colorado Walk & Roll to Cure FSHD!

Phillip S. Miller Park 1375 W Plum Creek Pkwy, Castle Rock, CO

Please mark your calendars for the 2021 Colorado Walk & Roll! We will see you on Sunday, September 12, 2021 Please reach out to the Walk Leader, Anne Babcock, with any questions! She can be reached at COWnR@fshdsociety.org We look forward to seeing you on September 12th!

2021 South Carolina Walk & Roll to Cure FSHD!

Myrtle Beach Myrtle Beach, South Carolina

Please mark your calendars for the 2021 South Carolina Walk & Roll! We will see you on Saturday, September 12, 2021 Please reach out to the Chapter Director, Sam Miller, with any questions! He can be reached at SouthCarolinaChapter@FSHDSociety.org. We look forward to seeing you on September 12th!

San Diego re:Connect

San Diego San Diego, CA

Tuesday, September 14, 2021 11:30am - 2:00pm Join HERE Please join us as we re:Connect as a chapter on Tuesday, September 14th. We are planning on virtual for now, but as things open up, we will plan to add in-person! Hope you can join us! ~Amy Bekier, San Diego Chapter Director