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,... 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... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Adaptive cooking and adaptive eating will be our topic this... 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,... 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... 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... Read More »
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Our guest is Don Burke, an FSHD Society member who recently retired from a high-impact... Read More »
19:00 PM CET | 18:00 PM UK | 13:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Jackie O'Doherty is a fitness trainer who works... 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,... 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,... Read More »
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT The end of September saw the first-ever workshop focused solely on pediatric FSHD. The workshop,... 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+... 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... 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... Read More »
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... Read More »
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... 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... Read More »
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... Read More »
19:00 CET | 18:00 UK | 1:00 PM ET | NOON CT | 11:00 AM MT | 10:00 AM PT Jackie O'Doherty is back to answer your questions about her... 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... 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... 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... 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,... 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... 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... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we're talking about women and wheelchairs: when to... Read More »
Please note, due to Halloween, October's CarePartner Hour has been moved to Wednesday, November 1, 2023. The time and link will remain the same. 8:00 – 9:00 PM ET |... 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,... 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!... 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... 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 Rita Lynn (far right) with her family... 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... 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... 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... 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... 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... 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... Read More »
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Join us as June Kinoshita, Senior Director of Research & Education, answers your questions about... 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 Rita Lynn (far right) with her family... Read More »
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Eva Chin, PhD Join us for a conversation with Eva Chin, PhD, Executive Director 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... Read More »
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... 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... Read More »
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... 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... 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... 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... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our guest this month is Loralei Thornburg, MD, professor of... 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!... 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... 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... 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... 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.... 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... 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... 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... 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... 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.... 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... 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.... 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.... 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... 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... 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,... 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... 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.... 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... 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... 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... 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,... 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 We kick off 2024 with something new... Read More »
EVENT: Sacramento Chapter Meeting DATE: Thursday, January 11, 2024 TIME: 6:30 pm - 7:30 pm PT WHERE: Zoom DETAILS: Join us for our upcoming chapter meeting where we will receive an update on the... Read More »
Bay Area Chapter Meeting DATE: Sunday, January 14, 2024 TIME: 1:00 pm - 3:00 pm PT WHERE: Stanford, Hoover Pavillion, Room 204, 211 Quarry Rd, Palo Alto, CA 94304 DETAILS: Please join the Bay... Read More »
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT In some individuals with FSHD, surgery to anchor the shoulder blades to the ribcage can... Read More »
Join host Tim Hollenback and special guest Chelsea Moeller for a discussion of living with FSHD, from diagnosis to trial participation. Tim also teases some updates to FSHD Radio. On... Read More »
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT For parents, figuring out how to advocate in schools for a child with a disability... Read More »
With Nicol Voermans, MD PhD, and Nathaniël Rasing, MD 19:00 CET | 18:00 UK | 1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00am PT While... 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... Read More »
6:00pm ET | 5:00pm CT | 4:00pm MT | 3:00pm PT Virginia Chapter Monthly Virtual Meeting (occurs every 4th Tuesday of the month). RSVP via the below button to ensure... Read More »
Join us for a Virtual Meeting! Please join us for our "Welcome to 2024" meeting, with lots of exciting news about current and upcoming clinical trials, as well as our... Read More »
Join host Tim Hollenback for a special conversation with Marisa Spain. Marisa, known for Disabled in Nature, her YouTube channel and Instagram, discusses living with Early On-Set FSHD, barriers to... 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 We kick off 2024 with something new... Read More »
Idaho Chapter Anniversary Dinner DATE: Thursday, January 25, 2024 TIME: 6:30 - 8:30 pm MT WHERE: Louie's Pizza & Italian Restaurant, 2500 E Fairview Ave, Meridian, ID 83642 DETAILS: Join us for a special dinner... 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... Read More »
7:00pm ET | 6:00pm CT| 5:00pm MT | 4:00pm PT EVENT: Columbus Chapter Meeting DATE: Wednesday, January 31, 2024 TIME: 7:00 pm – 8:00 pm EST WHERE: Zoom DETAILS: Join... Read More »
8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday of the month for a... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Thanks to our members for responding to our annual survey!... 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 This month, Frank Hanley will present a... Read More »
9:00am ET | 8:00am CT | 7:00am MT | 6:00am PT Join us for a virtual meeting! Saturday, February 10th at 9am ET Dear Friends, Join us for our regular... Read More »
3:00pm ET | 2:00pm CT | 1:00pm MT | 12:00pm PT Pacific Northwest Chapter Meeting, 12:00-2:00pm PT at the Sellwood Library Meeting Room Address: 7860 SE 13th Ave, Portland 97202... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month we will discuss Ayurvedic medicine, the ancient Indian system of integrative, holistic medicine.... Read More »
Tuesday, February 13th In this month's Community Profiles episode, Tim sits down with Jane Nemke, an accredited International Association Color Consultant and the founder of Designs to Thrive. Jane shares... Read More »
Breathing with FSHD, Andrea Klein 19:00 CET | 18:00 UK | 1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Today’s webinar discusses how... 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... Read More »
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Please join Robert Ro and the Young Adults group for a discussion on Preventative Care... Read More »
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT This month, we'll be sharing news from the FSHD Society's annual Volunteer Leadership Summit in... 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 We review the hip flexor exercises from... Read More »
Tuesday, February 27th We’re thrilled to share a conversation with Danny Kurtzman and Shane Stanger, the duo behind Good Bad Things! Their film is currently making waves (and taking home... Read More »
