Lighting the Way to a Cure

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 »

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 »

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 »

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 »

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 »

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 »

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 »

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 »