Hello Friends! Please join us on June 20th, 2023 at 6pm as we celebrate World FSHD Day together! WHERE: Tap & Barrel - Convention Centre : 876-1055 Canada Place, Vancouver, BC V6C 0C3 WHY: It's WORLD FSHD DAY! The global day of awareness for FSHD. WHAT: Let's have some fun as we raise awareness. Appetizers and... Read More »
Join us for the Atlanta Chapter Watch Party as the King & Queen Buildings light up orange in honor of World FSHD Day! Tuesday, June 20, 2023 7:30pm ET El Azteca Perimeter 6115 Peachtree Dunwoody Road, Ste. 100, Sandy Springs, GA 30328
Western PA Chapter Meeting Wednesday, June 21 6:30 – 8:00pm ET Please join us for a virtual meeting of the Western PA Chapter to chat among ourselves, plan our family picnic scheduled for Saturday, August 5, discuss the launch of this year's Drum & Roll to Cure FSHD, learn about the latest developments at the... Read More »
Thursday, June 22nd On the 4th Thursday of every month, look for a new episode of FSHD Radio: Hot off the Press. Each month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society, including research updates, upcoming events, and important developments to keep you updated... Read More »
Idaho Chapter Meeting Thursday, June 22, 2023 6:30pm MT Louie's Pizza and Italian Restaurant at 2500 E Fairview Ave, Meridian, ID 83642 Join us for dinner! This will be an opportunity to spend an evening with good food, socializing and meeting FSHD Society staff members, Beth and Ashley. Event is free, but please RSVP.
Please join us on Saturday June 24th for a casual breakfast get-together, and for our first in-person meeting of the Alberta Chapter! WHAT: Let us treat you to breakfast, hear some important FSHD updates, and have great conversation. This is a family-friendly event so bring the whole family! WHEN: Saturday June 24th at 9am MT WHERE:... Read More »
Please join the Columbus Chapter and Nationwide Children's Hospital for an exciting day of research and community! Hear from Dr. Kevin Flanigan, Dr. Scott Harper, and Dr. Nizar Saad, then have the opportunity to actively participate in a study! In addition, hear from FSHD Society's Columbus Chapter Director Susan Aumiller, screen a short documentary, and... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Prepare your favorite alcoholic or non-alcoholic drink (you can download below a pdf of some cocktail recipes created by Susie Kanewske, director of the Chicagoland chapter formerly the Northwest Pacific chapter director). We want everyone to tell us what they... Read More »
Tuesday, July 11th For this month’s Community Profiles episode, we welcome Beverly Weurding, the visionary behind the Wheelchair Dancers Organization. Diagnosed with Limb Girdle Muscular Dystrophy at the age of 55, Beverly was navigating life as a new wheelchair user at a time when many contemplate retirement. Empowered by her physical therapist's support, she founded... Read More »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Epic Bio, a San Francisco based therapeutics company, is developing a gene therapy medicine specifically for FSHD patients. The new product, termed EPI-321, leverages a CRISPR-based platform to precisely find and fix the specific issue in the genome that causes FSHD.... Read More »
Thursday, July 27th The 2023 Walk & Roll to Cure FSHD is just around the corner, and Beth Johnston, the FSHD Society's Chief Community Engagement Officer, has all the details you need to know! Listen to hear about what the Walk & Roll is, how to get involved, and what’s new this year. Led entirely... Read More »
Heartland Chapter Happy Hour Friday, July 28, 2023 3:30 pm - 5:30 pm CT Boulevard Beer Hall - 2534 Madison Ave, Kansas City, MO 64108 Join us for an afternoon of fun and networking where you can connect with other members of the FSHD community. Drinks and light appetizers will be provided. Please RSVP below.
Thursday, August 3, 2023 7pm ET/6pm CT/5pm MT/4pm PT We'll bring together all our team captains via Zoom, to celebrate and honor your hard work, help you pack your toolkit for success, and have a little fun! Invite your Team Members, too!
Western PA Summer Picnic Saturday, August 5th, 2023 Adams Township Community Park, 698 Valencia Road, Mars, PA 16046 More details forthcoming! We hope you can join us again this year for the annual summer gathering of the Western PA Chapter! We will be returning to the fantastic Adams Township Community Park pavilion, for a BBQ... Read More »
Tuesday, August 8th This month, Tim has the pleasure of sitting down with Ryan Levinson, a world traveler and legend in the FSHD Community. Ryan's remarkable story makes this an episode that you won't want to miss! Diagnosed with FSHD as a teenager, Ryan's unwavering determination has never allowed his diagnosis to stand in the... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT For many of us, communing with Nature is an important contributor to wellbeing, so we are looking forward to this month's discussion. FSHD Society member Paul Miller will be speaking about "Bringing the beauty of birds into our daily lives."... Read More »
Mountain State Chapter Meeting Tuesday, August 15, 2023 5:30 pm - 6:30 pm PT | 6:30 pm - 7:30 pm MT Join us for a special chapter meeting for all Mountain state chapters (Colorado, Idaho, Utah, and Nevada) where the FSHD Society's Chief Science Officer, Dr. Jamshid Arjomand, will provide attendees with an overview of current... Read More »
DATE: Saturday, August 19, 2023 TIME: 5:00 pm - 7:00 pm PT WHERE: Mimi's Cafe, 2029 Alta Arden Expy, Sacramento, CA 95825 Join us for an in-person get-together where you will have the chance to meet and connect with other members of the community, hear from FSHD Society staff about upcoming events, and learn about new and exciting updates.... Read More »
CenTex Virtual Chapter Meeting Monday, August 21, 2023 7:00pm – 8:00pm CT Join us as we chat about the upcoming Walk & Roll to Cure FSHD and the FSHD 360!
Thursday, August 24th This month, Max Adler, a long-time friend of the FSHD Society, sits down with Tim to talk about the LA Walk & Roll. We can't wait to hear about the exciting plans for this event: Max has a supporting role in Good Bad Things, and the film's star Danny Kurtzman and director... Read More »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Megan McNiff Our speaker is Megan McNiff, a research associate from the John Walton Muscular Dystrophy Research Centre, Newcastle University, UK. She will be presenting the results from the FSHD European Patient Survey. The survey received over 1,000 responses from 26... Read More »
San Diego Virtual Chapter Meeting Thursday, August 24, 2023 6:00-7:00 pm PT Register below for our upcoming Walk n Roll Committee meeting. By this date you should be signed up online as a Walker or Team Captain HERE and have invited your friends and family to register/donate. It's easy to do. Once you're registered click the... Read More »
Connecticut Chapter Annual Luncheon Saturday, August 26, 2023 12:00pm – 2:00pm ET On the Border Mexican Grill & Cantina 1519 Silas Deane Highway Rocky Hill, CT 06067 Join us to meet new people, reconnect, and celebrate!
British Columbia Walk & Roll Celebration: Tuesday September 5th, 6pm (check-in starts at 5:30pm) The Pint Public House, 455 Abbott Street, Vancouver, BC Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access... Read More »
Alberta Walk & Roll Saturday, September 9, 2023 Registration at 8:30 a.m. TENTATIVE - RiverWalk Plaza: 618 Confluence Way SE Calgary AB T2G 0G1 Canada Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page... Read More »
Colorado Walk & Roll Sunday, September 10, 2023 Registration & Check-in 8am Philip S. Miller Park Amphitheater - Castle Rock, CO Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a... Read More »
Pacific Northwest Walk & Roll Sunday, September 10, 2023 12:00 PM Cockrell Cider, 6613 114th Ave Ct E, Puyallup, WA. 98372 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT September is National Fall Prevention month . Who better to talk about fall prevention than people who are prone to falling (yes that is us -FSHDers!!!). Join us as we share tips and tricks from many in our FSHD community... Read More »
Tuesday, September 12th Jenny and Tony Teel This month, Tim talks with guests Jenny and Tony Teel! This dynamic married couple runs a popular YouTube channel where they share valuable information and provide encouragement within the context of their interabled relationship. Tony, who lives with FSHD, has led them on a remarkable journey of discovering... Read More »
Arizona Walk & Roll Saturday, September 16, 2023 • 7:30 am Scottsdale, AZ Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share... Read More »
Ontario Walk & Roll Saturday, September 16th 2023 9:00 am check in Lake Aquitaine Park - Mississauga, ON Register to "walk or roll" today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center.... Read More »
Chicago Walk & Roll Saturday, September 16th 2023, 10:00 am Citizens Park, Robert Soule Amphitheater Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you... Read More »
NE Florida Walk & Roll Saturday, September 16, 2023 Arrival & check-in starting at 5pm. Burgers and reception 5:30 - 6:30pm, Baseball game starts at 6:35pm. Jacksonville Jumbo Shrimp Baseball Game at 121 Financial Ballpark Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you.... Read More »
Los Angeles Walk & Roll September 17, 2023 Registration 8am Woodley Park, 6076 Woodley Ave, Encino, CA 91316 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center.... Read More »
Western PA Drum & Roll Planning Meeting (Virtual) Wednesday, September 20, 2023 6:30pm – 7:30pm ET Join us as we plan and discuss the upcoming Drum & Roll!
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Maaike Pelsma Join Maaike Pelsma, a pediatric physical therapist, to learn about shoulder dyskinesia in children with FSHD. Pelsma will describe how children with scapular weakness often use compensational strategies, especially when using the arm above shoulder level, that can be... Read More »
10:00 AM ET | 9:00 AM CT | 8:00 AM MT | 7:00 AM PT Tune in as FSHD Radio podcast host, Tim Hollenback, interviews Walkers and Rollers during our annual coast to coast Walk & Roll Celebration Livestream! This special three-hour show will stream live on Facebook and YouTube. This year, Tim will be... Read More »
Columbus Walk & Roll Saturday, September 23, 2023 9:00 am Coffman Park Pavilion 5200 Emerald Pkwy Dublin, OH 43017 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising... Read More »
Intermountain Walk & Roll Saturday, September 23, 2023 9:00am Registration Canyon Rim Park, East Pavilion, Millcreek UT Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From... Read More »
St. Louis Walk & Roll Saturday, September 23, 2023 9am-Registration/10am-Walk&Roll Hawk Ridge Park/Zachary's Playground, 8392 Orf Road, Lake Saint Louis, MO 63367 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to... Read More »
Virginia Walk & Roll CANCELED With the impending storm this weekend, we have made the difficult decision to cancel Saturday's Walk & Roll. Thank you so much to everyone who registered and supported this event. Please stay safe! Saturday, September 23, 2023 Registration opens at 10am Norfolk Zoo, 3500 Granby St., Norfolk, VA 23504 Register... Read More »
Mid-Atlantic Walk & Roll CANCELED With the impending storm this weekend, we have made the difficult decision to cancel Saturday's Walk & Roll. Thank you so much to everyone who registered and supported this event. Please stay safe! Saturday, September 23, 2023 Registration opens, 10:30 am; Walk, 11:00 - 11:30 am; Team photos, awards, and... Read More »
Minnesota Walk & Roll Sunday, September 24, 2023, 8:00 am Normandale Lake Bandshell Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share... Read More »
Bay Area Walk & Roll Sunday, September 24, 2023 • 11:00 am Sharon Park Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can... Read More »
West Michigan Walk & Roll Mulligan's Hollow Lodge, 600 Y Drive, Grand Haven, MI. 49417 Sunday 9/24. Registration Opens: 2pm; Walk Begins: 2:30pm. Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to... Read More »
North Texas Walk & Roll Sunday, September 24, 2023 2:00 p.m. registration Warren Sports Complex 7599 Eldorado Parkway, Frisco, TX 75033 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a... Read More »
Thursday, September 28th 14:00 PM CET | 13:00 PM UK | 8:00 AM ET | 7:00 AM CT | 6:00 AM MT | 5:00 AM PT Earlier this month, Fulcrum Therapeutics confirmed the completion of patient enrollment in the Phase 3 REACH clinical trial for losmapimod (read about the exciting news here), a potential groundbreaking... Read More »
CenTex Walk & Roll Sunday, September 30, 2023 8:00 am Champion Park Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your... Read More »
San Diego Walk & Roll Saturday, September 30, 2023 Registration starts at 8:00 a.m. Harbor Island Park, 1875 Harbor Island Dr., San Diego, CA 92101 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page... Read More »
Kansas City Walk & Roll Saturday, September 30, 2023 Macken Park Festival Shelter Registration 9:00am, Opening Ceremonies 9:45am, Walk Starts 10:00am Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a... Read More »
New England Walk & Roll Saturday, October 7, 2023 11:00am Check In Optum Roofdeck, 1325 Boylston St., Boston MA 02215 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT With all the floods, hurricanes, fires, and earthquakes in the news lately, we're reminded of how it's important to be prepared for emergencies. Having a disability requires extra planning. A handy reference is FEMA's Disaster Preparedness Guide for Older Adults.... Read More »
Tuesday, October 10th This month, we welcome actress, dancer, and choreographer Donna Russo. A performer with FSHD and Turner Syndrome, Donna has graced the stage in various productions, including Alvin and the Chipmunks and the Magic Camera, as Alvin. Her versatility extends to the world of television and film, where she has left her mark... Read More »
9:00 a.m. US Pacific Time doors open | 10:00-3:00 p.m. US PT conference sessions The FSHD Society, in collaboration with Friends of FSH Research and the University of Washington Seattle, is hosting this year’s Pacific Northwest FSHD 360 conference. The University of Seattle is an international leader in FSHD research and a member of the... Read More »
Atlanta Walk & Roll Sunday, October 15, 2023 Registration at 10:00 a.m. Chattahoochee Nature Center, 9135 Willeo Rd, Roswell, GA 30075 Register to “walk or roll" today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a... Read More »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Michaela Walker NOTE: Date has been changed from July 20 to October 19. MOVE and MOVE+ are the largest natural history studies to date of FSHD. Our webinar will be given by Michaela Walker, who is research project manager for these... Read More »
Sunday, October 22nd 2023, 3-5pm MT Lansdowne Arms - 9352 Dorchester St. in Highlands Ranch. We'll be in the Library Room Hello Friends, I hope you can join us for our October Chapter Meeting! Our agenda includes updates on clinical trials, fundraising results, and the debut of the Colorado FSHD pain management document and resource... Read More »
Connecticut Chapter Connections Virtual Meeting Join us for a meeting of the Connecticut Chapter on Wednesday, October 25, 2023, from 7:00 from 8:30 pm ET. Please RSVP at the link below!
Thursday, October 26th Today's program features the FSHD Society's Anna Gilmore, who oversees the Society's new initiative, FSHD Navigator. This program will provide superior in-person and web-based assistance to individuals who are seeking solutions to their FSHD-related challenges. These may include getting into clinical trials, finding qualified therapists and physicians, getting advice and help for... Read More »
Putting Fore a Cure Saturday, October 28, 2023 Wildhorse Golf Club Henderson, NV 7:30 am Shotgun Start Mark your calendars for Saturday, October 28th, when we will be holding our very first golf tournament, Putting Fore a Cure! We look forward to coming together, swing by swing, to raise funds as we tee off for... Read More »
11:00 am ET | 10:00 am CT | 9:00 am MT | 8:00 am PT Managing Symptoms and Improving Quality of Life with Tara Hill and Glen Denehie FSHD Young Professionals is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers... Read More »
** CANCELED ** We are sad to say that due to the lack of RSVP responses, we are canceling the brunch gathering scheduled for this Saturday in Edmonton. Please don't hesitate to reach out, and stay-tuned as we plan other events. Warmly, Jennie Camarta & Karen Camarta FSHD Society Chapter Directors - Alberta Chapter AlbertaChapter@FSHDSociety.org www.FSHDSociety.org... Read More »
New Jersey Shore Walk & Roll RESCHEDULED to Saturday, October 28, 2023 • 10:00 am Seaside Heights Boardwalk @ Heiring Ave. Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a... Read More »
18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed... Read More »
Join us for FSHD Radio’s first-ever Thanksgiving Special as we come together and give thanks for the strength and resilience that make our community shine. This year, we want to extend our appreciation to none other than YOU! This special Thanksgiving broadcast is our way of saying thank you for being a part of our... Read More »
EVENT: Sacramento Chapter Meeting DATE: Thursday, November 2, 2023 TIME: 6:00 pm - 7:00 pm PT WHERE: Zoom Meeting, Virtual DETAILS: For many of us, communing with Nature is an important contributor to well-being, but can sometimes seem difficult as an individual with FSHD. Join us for our next Sacramento chapter meeting where FSHD Society member, Paul Miller, will... Read More »
Greater Philadelphia Chapter Meeting Saturday, November 4, 2023 10:00 am – 12:30 pm ET Wissahickon Valley Public Library 650 W. Skippack Pike, Blue Bell, PA 19422 Register here: go.fshdsociety.org/l/701273/2023-05-09/439tq1
Drum & Roll to Cure FSHD Sunday, November 5, 2023 • 1:00 pm National Aviary, The Garden Room, Pittsburgh, PA Register for the 2023 Western Pennsylvania Drum & Roll today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and... Read More »
Join us for our next Mid-Atlantic Chapter Meeting on Saturday, November 11th, from 12:00 to 3:00 pm ET for an afternoon of in-person food and fun! We'll be celebrating our 2023 Walk & Roll to Cure FSHD success ($39,200 and counting!), and enjoying some long-overdue social connection. Please bring your favorite board game!!! Lunch will be provided, so RSVP's... Read More »
9:00 a.m. US Eastern Time doors open | 9:30 a.m. - 3:30 p.m. US ET conference sessions The FSHD Society, in collaboration with the Ohio State University and Nationwide Children's Hospital, is hosting this year’s Ohio FSHD 360 conference. The OSU and Nationwide are international leaders in muscular dystrophy research and clinical trials, and are... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT All of us consult "Dr. Google" when we have health questions, but how do we know if the information we find is medically sound. When our own health is involved, this is not something to take lightly! This month, we... Read More »
Magic for a Cure 6pm Cocktails * 7pm Dinner * 7:45pm Magic The Pointe at Naples Bay Resort: 1500 Fifth Avenue South Naples, FL 34102 Join us for an evening of fun and magic as we raise awareness and critical funding for FSHD! We'll enjoy cocktails, dinner, and entertainment from celebrity magician, John Stessel. Click... Read More »
Meeting Invitation Thursday, November 16, 2023 7:00 - 8:00pmET Via Zoom Join us for our next Michigan Chapter Meeting on Thursday, November 16th, from 7:00 - 8:00 p.m. ET! We'll be celebrating our 2023 Walk & Roll to Cure FSHD success -- we crushed our $25,000 goal! We'll also be discussing our goals for 2024. Please come with ideas of... Read More »
Join us for FSHD Radio’s first-ever Thanksgiving Special as we come together and give thanks for the strength and resilience that make our community shine. This year, we want to extend our appreciation to none other than YOU! This special Thanksgiving broadcast is our way of saying thank you for being a part of our... Read More »
Tune in to a special FSHD Radio episode! Emma Weatherley, Managing Director of FSHD Global, joins Tim to share exciting news: Michael Dickson of the Seattle Seahawks is raising FSHD awareness. The NFL player has chosen FSHD Global (our Australian counterpart and fellow Project Mercury member) as his nominated charity for the "My Cause My... Read More »
FSHD is in the national spotlight! Emma Weatherley, Managing Director of FSHD Global, joins Tim to share exciting news: Michael Dickson of the Seattle Seahawks is raising FSHD awareness. The NFL player has chosen FSHD Global, our Australian counterpart and fellow Project Mercury member, as his nominated charity for the “My Cause My Cleats” campaign,... Read More »
North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to see you there! At meeting time, please click this link to... Read More »
Date and Time: Wednesday December 6, 2023 at 6:00pm PT Location: Virtually by Zoom: RSVP HERE to receive the zoom link Details: Please join us for a little virtual Holiday Cheer! Let's get-together to reconnect, welcome new members, share information and ask/answer any questions. Bring your favorite holiday drink (a cocktail, hot chocolate, coffee, tea etc.)... Read More »
MEETING: British Columbia Chapter - Virtual Meeting DATE: Thursday, December 7th, 2023 TIME: 6:00pm PT WHERE: Virtually, via ZOOM. Please RSVP HERE to receive the Zoom link. DETAILS: With the Holidays quickly approaching, we hope you can join us for our final meeting of 2023! We are excited to share with you: - Presentation from Neil Camarta,... Read More »
Join us for a virtual social gathering before the Holidays! Thursday, December 7th, 2023 - 7:00pm ET via ZOOM Hello Ontario friends, I hope you can join us for a casual, virtual social gathering via Zoom for us all to reconnect before the busy Holidays! PLEASE RSVP. "See" you there! Warmly, ~ Carrie Wilkinson,... Read More »
Join us for a virtual meeting! Saturday December 9th, 2023 at 9am ET Dear Friends, I hope you can join us for the first of a series of regular bi-monthly meetings to provide consistent communication and camaraderie among our group. This first meeting will be virtual via zoom PLEASE RSVP to receive the Zoom link.... Read More »
Hello Friends! I hope you can join us for a Holiday Social Gathering! WHEN: Sunday, December 10, 2023, 3-6pm MT WHERE: Lansdowne Arms - 9352 Dorchester St. in Highlands Ranch. WHAT: Please join us for a holiday social gathering featuring a white elephant gift exchange (details below). Drinks and appetizers will be provided. We hope... Read More »
Dancing with differences: A Moving Celebration of the Season 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us for a joyous and energizing Chair Dance Party to celebrate the winter and holiday season. Bring your favorite libation and be prepared to shake, rattle and roll to dance... Read More »
Tuesday, December 12th In this episode, Tim chats with Michael Osborne, a fellow Milwaukeean and baseball coach living with FSHD. Michael and Tim share the story of how they met by chance on the baseball field and what it means to come across another person who understands the experience of having FSHD. Michael, a dad... Read More »
18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Join us this month for a session with Trish Kean on Shaking Qigong. Trish has been a licensed massage therapist since 1998 and has had a daily Qigong practice since 2005. In... Read More »
EVENT: Sacramento Chapter Holiday Gathering DATE: Thursday, December 14, 2023 TIME: 6:00 pm - 8:00 pm PT WHERE: Mimi's Cafe 2029 Alta Arden Expy, Sacramento, CA 95825 DETAILS: Many of our chapter members have requested the opportunity to gather for a social event during the holiday season to network, connect, and celebrate the Sacramento Chapter community we reignited this... Read More »
Wellness Hour Monthly Meeting 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT The Wellness Hour is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers, share challenges, talk about what works for you, and feel validated and supported in... Read More »
St. Louis Chapter Holiday Gathering DATE: Saturday, December 16, 2023 TIME: 2:00pm - 5:00pm CT WHERE: 4Hands Brewery, 17081 N Outer 40 Rd, Chesterfield, MO 63005 DETAILS: Join us for a special holiday gathering to celebrate the wonderful work our chapter has done this year, the opportunity to connect with one another, and start brainstorming how we can... Read More »
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Back by popular demand, Dr. Jen Egert will lead us through a mindfulness meditation session. Dr. Egert is a clinical psychologist with FSHD who offers mindfulness based psychotherapy and workshops to cope with stress and anxiety. She began her own... Read More »
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Carden Wyckoff This month we will host a roundtable conversation with young adults with FSHD. They were diagnosed as children or teens and will share their personal journeys of going through adolescence and becoming young adults while navigating the challenges... Read More »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Dr. Nicholas Johnson Every year, we bring you an update on therapy development for FSHD. What strategies are being considered? How are different candidate drugs progressing through the process of reaching the clinic? What’s the latest on clinical trials? Nick Johnson,... Read More »
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Dear friends, Welcome to the "Third Thursday" meetings of the North Carolina Chapter! Whether or not you've attended our group's events before, we hope you will join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we are... Read More »
DECEMBER MEETING CANCELLED. See you in January! 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... Read More »
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 care partners (the term we... Read More »
DECEMBER 27 MEETING CANCELLED. See you in January! North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday of the month for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness happen on a consistent basis! At meeting time, please click... Read More »
Thursday, December 28th On the 4th Thursday of every month, look for a new episode of FSHD Radio: Hot off the Press. Each month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society, including research updates, upcoming events, and important developments to keep you updated... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We're starting the year off by discussion about spreading our wings with ancillary groups. we'll also be sharing favorite life hacks and what's on our minds - setting our agenda for the coming year. We... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We're starting the new year off with an ice breaker online card game. Kind of silly but it's also an effective way to stimulate interesting conversations that will help us all get to know one another better. We hope you'll... Read More »
The Alberta Chapter invites all Canadian Chapter members to join a virtual meeting on January 9th, 2024! Guest speakers include Amanda Hill, Director of Clinical Research at the FSHD Society, Neil Camarta and Craig Kelly of the FSHD Canada Foundation, and Dr. Dillon Chen of Arrowhead Pharmaceuticals. Amanda will be giving us an update on... Read More »
