2021 NE Florida Walk & Roll to Cure FSHD!

Jacksonville Zoo 370 Zoo Pkwy, Jacksonville, FL

Please mark your calendars for the 2021 NE Florida Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Christi Thissen, with any questions! She can be reached at NEFloridaChapter@FSHDSociety.org. We look forward to seeing you on September 18th!

2021 East Tennessee Walk & Roll to Cure FSHD!

East Tennessee knoxville, TN

Please mark your calendars for the Virtual 2021 East Tennessee Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Candice Norman, with any questions! She can be reached at EastTNChapter@FSHDSociety.org. We look forward to "seeing" you on September 18th!

2021 Ontario Walk & Roll to Cure FSHD!

Lake Aquitaine Park 6655 GLEN ERIN DR, Mississauga, Ontario

Please mark your calendars for the 2021 Ontario Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Walk Leader, Steve Johnston, with any questions! He can be reached at OntarioWnR@FSHDSociety.org. We look forward to seeing you on September 18th!

2021 Southwest Florida Walk & Roll to Cure FSHD!

Baker Park 50 Riverside Circle, Naples

Please mark your calendars for the 2021 Southwest Florida Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Heloise Hoffmann, with any questions! She can be reached at SWFloridaChapter@fshdsociety.org. We look forward to seeing you on September 18th!

2021 International Walk & Roll to Cure FSHD!

International Virtual Walk & Roll

Please mark your calendars for the 2021 International Walk & Roll! We will "see" you virtually on Saturday, September 18, 2021! Please reach out to the FSHD Society with any questions!  FSHCommunity@FSHDSociety.org

2021 Dakotas Walk & Roll to Cure FSHD!

Urban Plains Park 3020 51st Street, Fargo, ND

Please mark your calendars for the 2021 Dakotas Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Bryan Domholt, with any questions! He can be reached at DakotasChapter@FSHDSociety.org We look forward to seeing you on September 18th!

2021 Idaho Walk & Roll to Cure FSHD

Julius M. Kleiner Memorial Park 1900 N. Records Ave, Meridian, ID

Register Today! The Idaho Walk & Roll to Cure FSHD will take place on Saturday, September 18th. This event is for everyone who want sto make a difference for FSHD. There are many ways to participate! Register to Walk & Roll, fundraise, and come join us in person for pancakes, a bounce house, and connection... Read More »

2021 St. Louis Walk & Roll to Cure FSHD!

Boulevard Park - Lake St. Louis, MO 2550 Lake St Louis Blvd, Lake St. Louis, MO

Please mark your calendars for the 2021 St. Louis Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Marsha Sverdrup, with any questions! She can be reached at StLouisChapter@FSHDSociety.org. We look forward to seeing you on September 18th!

2021 Utah Walk & Roll to Cure FSHD!

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

Please mark your calendars for the 2021 Utah Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Allison Calder, with any questions! She can be reached at UtahChapter@FSHDSociety.org. We look forward to seeing you on September 18th!

2021 California Walk & Roll to Cure FSHD!

California Los Angeles, CA

Please mark your calendars for the VIRTUAL 2021 California Walk & Roll! We will "see" you on Saturday, September 18, 2021 Please reach out to the Chapter Directors, Amy Bekier or Sue Drescher, with any questions! They can be reached at CAWnR@FSHDSociety.org. We look forward to "seeing" you on September 18th!

2021 North Carolina Walk & Roll to Cure FSHD!

North Carolina NC

Please mark your calendars for the Virtual 2021 North Carolina Walk & Roll! We will "see" you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Meredith Huml, with any questions! She can be reached at NCChapter@FSHDSociety.org. We look forward to "seeing" you on September 18th!

2021 Kansas City Walk & Roll to Cure FSHD!

Kansas City Kansas City, MO

Please mark your calendars for the Virtual 2021 Kansas City Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Kiley Higgs, with any questions! She can be reached at KansasCityChapter@FSHDSociety.org. We look forward to "seeing" you on September 18th!

2021 Wisconsin Walk & Roll to Cure FSHD!

Wisconsin WI

Please mark your calendars for the Virtual 2021 Wisonsin City Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Tim Hollenback, with any questions! He can be reached at WisconsinChapter@FSHDSociety.org. We look forward to "seeing" you on September 18th!

2021 Mid-Atlantic Walk & Roll to Cure FSHD!

Mid-Atlantic DC

Please mark your calendars for the 2021 Mid-Atlantic Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Ann Kolakowski, with any questions! She can be reached at MidAtlanticChapter@FSHDSociety.org. We look forward to seeing you on September 18th!

2021 Central Texas Walk & Roll to Cure FSHD!

Founders Park Pavillion 419 Founders Park Road, Dripping Springs

Please mark your calendars for the 2021 Central Texas Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Ashley Bryan, with any questions! She can be reached at CenTexWnR@FSHDSociety.org We look forward to seeing you on September 18th!

2021 Dallas Walk & Roll to Cure FSHD!

Dallas Dallas, TX

Please mark your calendars for the 2021 Virtual Dallas Walk & Roll! We will "see" you on Saturday, September 18, 2021 Please reach out to us at FSHCommunity@FSHDSociety.org  

2021 Arizona Walk & Roll to Cure FSHD!

Silverlake Park 2420 South Kino Pkwy, Tucson

Please mark your calendars for the 2021 Arizona Walk & Roll! We will see you on Saturday, September 18, 2021 Check-in 9am | Ceremonial Walk/Roll 10am at ​Silverlake Park, Tucson If you are in the Phoenix Area you are invited to join the Red Scooter Riders for a pop-up walk celebration. Get the details HERE... Read More »

2021 Atlanta Walk & Roll to Cure FSHD!

Atlanta, GA Atlanta, GA

Please mark your calendars for the 2021 Atlanta Walk & Roll! We will see you on Saturday, September 18, 2021 Please reach out to the Chapter Director, Jack Gerblick, with any questions! He can be reached at AtlantaChapter@FSHDSociety.org. We look forward to seeing you on September 18th!

2021 Philadelphia Walk & Roll to Cure FSHD!

Wissahickon Valley Public Library, Community Room 650 Skippack Pike - Blue Bell, Blue Bell, PA

Please mark your calendars for the Virtual 2021 Philadelphia Walk & Roll! Though our Walk & Roll will be virtual this year, we will gather for a celebratory Chapter meeting on Saturday, Sept. 18th at 10am at the Wissahickon Valley Public Library (650 Skippack Pike, Blue Bell PA 19422). There will also be a Zoom link available for those who cannot... Read More »

2021 Minnesota Walk & Roll to Cure FSHD!

Mount Normandale Lake Bandshell 5901 West 84th Street, Bloomington, MN

Please mark your calendars for the 2021 Minnesota Walk & Roll! We will see you on Sunday, September 19, 2021 Please reach out to the Chapter Director, Jacob Wise, with any questions! He can be reached at MinnesotaChapter@FSHDSociety.org. We look forward to seeing you on September 19th!

2021 Pacific Northwest Walk & Roll to Cure FSHD!

Town Square Park 31600 Pete von Reichbauer Way S,, Federal Way, WA

Please mark your calendars for the 2021 Pacific Northwest Walk & Roll! We will see you on Sunday, September 19, 2021 Please reach out to the Walk & Roll Leader, Selina Lai with any questions! She can be reached at PNWWnR@FSHDSociety.org. We look forward to seeing you on September 19th!

Western PA Drum & Roll Planning Meeting

Western PA Virtual Pittsburgh, PA

Thursday, September 23, 2021 6:00pm Eastern Time Please join us for a virtual meeting of the Western PA Chapter to help plan for our Drum & Roll to Cure FSH Muscular Dystrophy! The future is in important hands: OURS! Please help our chapter and the FSHD Society take steps today for a brighter tomorrow for... Read More »

FSHD 360 UCLA

Tamkin Auditorium, Ronald Reagan Hospital 757 Westwood Plaza, Los Angeles, CA

Meet the dedicated clinicians and researchers at UCLA at this year's FSHD 360 Los Angeles conference. Dr. Perry Shieh 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 UCLA as well as promising advances in FSHD therapies from... Read More »

North Carolina Virtual Chapter Meeting

North Carolina NC

Saturday, September 25, 2021 3:00pm-5:00pm Eastern Time Please join us for the next virtual gathering of the North Carolina Chapter, this Saturday, September 25th, 3pm ET! This will be an informal meeting, and everyone is welcome to share updates, ask questions, and bring your ideas. We love having this time to catch up with friends... Read More »

Early-onset Chapter Meeting with Dr. Natalie Katz

Zoom Virtual Meeting

The Early-onset FSHD Chapter is hosting a meeting for all families impacted by early-onset or infantile FSHD. September 27th 2:00 MST/PT, 3:00 MT, 4:00 CT, 5:00 ET Our special guest speaker will be Dr. Natalie Katz, U of Rochester. A  more detailed agenda will be posted soon! Make plans to join us via Zoom for... Read More »

Recurring

Virginia Monthly Meeting

Zoom Virtual Meeting

Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! For the last meeting of the year, we will be celebrating how far we have come in 2021, and looking... Read More »

Targeting a Cure

Tampa Bay Sporting Clays 10514 Ehren's Cutoff, Land O'Lakes, FL

Join Us on Saturday, October 2, 2021 George Pollock Jr, Founder of the FSHD Cycling Team, is hosting the first annual "Targeting a Cure for FSHD" to raise awareness and funds for FSH Muscular Dystrophy (FSHD). This will be a great day to re-connect with friends - old and new! Join us to shoot, to... Read More »

Western PA Chapter Meeting & Celebration

West End-Elliott Overlook Park (Elmer Creek Pavilion) Marlow St., Pittsburgh, PA

Sunday, October 3, 1:00 p.m. West End-Elliott Overlook Park (Elmer Clark Pavilion) Marlow Street, Pittsburgh, PA 15205 Together we can ensure no one on this journey travels alone. The Western PA Chapter will have an in-person  meeting and Celebration on October 3 at 1:00 p.m. at the West End-Elliott Overlook Park (Elmer Clark Pavilion), Marlow... Read More »

New England 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. We look forward to "seeing"/meeting you soon! -Kathy Senecal, Chapter Director JOIN THE MEETING HERE!

South Carolina Chapter Meeting

Zoom Virtual Meeting

Please JOIN US for our Fall South Carolina Chapter meeting! Tuesday October 12th, 2021 - 8-9 PM Eastern Time 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... Read More »

Chicago Virtual Chapter Meeting

Chicago IL

Saturday, Oct. 23rd, 2021, 10am CT 11am ET | 10am CT | 9am MT | 8am PT Via Zoom:  https://us02web.zoom.us/j/82661566456?pwd=VmhLTXRnNGRqYnkyd2dLRExEUTZaZz09 It’s been a while since we got together as a chapter, and we miss you all! With that in mind, we’ve scheduled our next virtual meeting – please mark your calendars for Saturday, Oct 23,... Read More »

Recurring

Virginia Monthly Meeting

Zoom Virtual Meeting

Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! For the last meeting of the year, we will be celebrating how far we have come in 2021, and looking... Read More »

FSHD 360 VCU

Virginia Commonwealth University Larrick Center, 900 Turpin Street, Richmond, VA

10:00-3:00 pm ET  Virginia Commonwealth University is one of the newer members of the FSHD Clinical Trial Research Network, but its director Nick Johnson, MD, has been a leader in the field going back to his time leading the CTRN group at the University of Utah. He and his superb team of clinicians and researchers... Read More »

Women on Wellness

First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This is our mutual support and social group for women of all ages who are living with FSHD. This month, we'll be discussing clothing and how to solve the challenges of finding garments that are... Read More »

Mid-Atlantic Virtual Chapter Meeting

Mid-Atlantic DC

Mid-Atlantic Virtual Chapter Meeting Saturday November 6, 2021 10:00am-11:00am ET We hope you will be able to join us for a very exciting virtual meeting with the Mid-Atlantic Chapter! We will be joined by our guest speaker, Dr. Doris Leung. She will share with us the details of her new position at KKI along with... Read More »

Western PA Drum & Roll

Andrew Carnegie Free Library and Music Hall 300 Beechwood Avenue, Carnegie, PA

Please mark your calendars: The 2021 Western PA Drum & Roll to Cure FSHD has been scheduled! We hope to see you on Saturday, November 6th, 2021! Event information can be found here: https://p2p.onecause.com/drumandroll Please reach out to the Chapter Director, Mark Christman, with any questions! He can be reached at WesternPAChapter@fshdsociety.org We look forward... Read More »

Magic for a Cure

Kolo Klub Hoboken, NJ

Please join us for "Magic for a Cure" for FSH Muscular Dystrophy on Thursday, November 18th at the Kolo Klub in Hoboken NJ! Celebrity Magician, John Stessel, will MC an amazing evening of fun and magic, all while raising awareness and critical funds for FSHD! For all event information, please click HERE Questions? Contact Beth... Read More »

Ontario Virtual Chapter Meeting

Ontario Ontario, Ontario

Saturday, November 20, 2021 11:00am-12:30am ET Please join fellow patient Emily Caouette for an extended-length session as she shares her FSH journey. Learn how she's improved her pain from years of level 8-10 down to 1-3 over the span of just four months. She’ll discuss FSH-focused studies, beneficial vitamins and supplements, low inflammation diet, helpful resources, and disease... Read More »

Recurring

Virginia Monthly Meeting

Zoom Virtual Meeting

Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! For the last meeting of the year, we will be celebrating how far we have come in 2021, and looking... Read More »

Women on Wellness – Menopause

First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month's Women on Wellness meeting will discuss menopause in women with FSHD. How has menopause affected your body and muscle functions? What are some tips and tricks for coping? This is our mutual support... Read More »

Columbus Chapter Meeting

Discovery Auditorium, Nationwide Children's Hospital 700 Childrens Dr, Columbus

Saturday, Dec. 11th, 2021 1pm – 2:30pm ET Discovery Auditorium, Nationwide Children’s Hospital 700 Children’s Drive Columbus, OH 43205 Please join us for an exciting Columbus Chapter Meeting, held at the Discovery Auditorium at Nationwide Children’s Hospital! Dr. Scott Harper will be our primary speaker, updating our group on what’s going on in the field... Read More »

Bay Area Virtual Chapter Meeting

Bay Area Virtual San Francisco, CA

Sunday, December 12, 2021 1:00pm - 2:00pm PT Please join us as Dr. Bill Lewis provided information about participating in the research study he is heading up at UC Davis. Hope to "see" you there. Kent and Sue Drescher, Bay Area Chapter Directors

Early Onset Parent Roundtable

Virtual Denver

Tuesday, December 14, 2021 8:00pm Eastern/5:00pm Pacific Please join us for the December Early-Onset Parent Roundtable, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as possible. This month Ally will provide information to parents about the MOVE study and participating sites, and pass... Read More »

GenZ of FSHD

4:00 PM ET | 3:00 PM CT | 2:00 PM MT | 1:00 PM PT This is the virtual meeting of the GenZ of FSHD group, for people with FSHD who were born after the mid-1990s (with some wiggle room). It is open to people from everywhere who are in this age group. Our purpose... Read More »

Virginia Monthly Meeting

Zoom Virtual Meeting

Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! For the last meeting of the year, we will be celebrating how far we have come in 2021, and looking... Read More »

Pacific Northwest Virtual Chapter Meeting

Seattle, Washington Seattle, WA

Saturday, January 15, 2022 10:00am-11:30am PT   Please join us for coffee hour for a casual meet up to plan future meetings and to check in with other chapter members! Hope to "see" you there! ~Selina Lai, Pacific Northwest Chapter Director

Recurring

Virginia Chapter virtual monthly meeting

Zoom Virtual Meeting

Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join... Read More »

Southwest Florida In-Person Chapter Meeting

Southwest Florida Naples, FL

SW Florida In-person Chapter Meeting Sunday, February 06, 2022 3:30pm ET Happy 2022! It’s been such a long time since we’ve been able to gather as a chapter. Let’s change that! You are invited to join us for a chance to reconnect with each other and celebrate all we have to look forward to this... Read More »

New England Virtual Chapter Meeting

New England Boston, MA

Wednesday, February 9, 2022 7:00pm-8:00pm EST Please join us for the first New England chapter meeting of 2022! We look forward to “seeing” everyone again soon. This meeting will be held virtually, so that as many of our group as possible can attend from the warmth & safety of their homes. Let’s start the new... Read More »

Recurring

Virginia Chapter virtual monthly meeting

Zoom Virtual Meeting

Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join... Read More »

North Carolina Virtual Chapter Meeting

North Carolina NC

Saturday, Feb. 26th 4pm ET | 3pm CT | 2pm MT | 1pm PT   Please join us for the next virtual gathering of the North Carolina Chapter, this Saturday, February 26th, 4pm ET! This will be an informal meeting, and everyone is welcome to share updates, ask questions, and bring your ideas. We love... Read More »

Pacific Northwest Chapter Meeting

Home of Selina, Russel and Stuart Lai 2210 7th St. NW, Gig Harbor, WA

Pacific Northwest Chapter Hybrid Meeting Saturday, March 5, 2022 12:00pm - 2:00pm Pacific Time 2210 7th St NW, Gig Harbor, WA Home of Selina, Russell & Stuart Lai Path to Personal Wellness - Tips from the Locals Please join us for our next Chapter meeting where we will hear tips from our local members! Guests... Read More »

Western PA Virtual Chapter Meeting

Western PA Virtual Pittsburgh, PA

Western PA Chapter Virtual Meeting Thursday, March 10, 2022 6:00 p.m. Eastern Time|5:00 Central Time|4:00 Mountain Time|3:00 Pacific Time Please join us for the first Western PA Chapter meeting of 2022! Jump on board via Zoom for a chance to reconnect with each other, explore the resources the FSHD Society makes available to support and... Read More »

All California Chapter Virtual Meeting

Virtual Denver

All California Chapters Meeting March 13, 2022 2:00PM PT|3:00PM MT|4:00PM CT|5:00PM ETAs the world opens and spring arrives we all need to re-energize. We invite you to register for a Zoom San Diego, Bay Area and Los Angeles Chapter meeting with Kent Drescher. Kent is an FSHD patient and a graduate of the Fuller Graduate... Read More »

Recurring

Virginia Chapter virtual monthly meeting

Zoom Virtual Meeting

Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join... Read More »

East TN Virtual Chapter Meeting

Virtual Denver

Saturday, March 26th 4:00pm ET|3:00pm CT|2:00pm MT|1:00pm PT You are invited to join us for a virtual meeting of the East TN Chapter! We are looking forward to reconnecting with friends old & new. At our first meeting of 2022, we will share some exciting updates from the Society, and discuss how we’d like to... Read More »

CenTex Virtual Chapter Meeting

Virtual Denver

CenTex Virtual Chapter Meeting Sunday, March 27, 2022 2:00PM Central Time Please join us as we welcome our guest speaker, Jodie Howell. She will discuss with us how to become clinical trial ready. There will be time for introductions and questions, so make sure to bring your questions to the meeting! We hope to “see”... Read More »

Columbus Chapter Meeting

Columbus Metropolitan Library-Dublin Branch 75 N High St, Dublin, OH

Saturday, April 2, 2022 10:00am ET Columbus Metropolitan Library - Dublin Branch (Meeting Room 1) 75 North Hight St. Dublin, OH 43017 Parking is located just behind the library Please join us for the next meeting of the Columbus Chapter! At this gathering, we are planning to discuss: Planning for 2022, the expectations of the... Read More »