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 you receive the reminder and zoom link. Please join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we... 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 »
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT When a child has a progressive, disabling condition like FSHD, the transition to adulthood and independent life can be challenge, as much for parents as for the new adult. Sherry Aiken guides many youths (and their families) through this process.... Read More »
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Dani Liptak If you are experiencing some level of disability from your FSHD symptoms (or other issues, for that matter), what are your rights to accessible public spaces, work environments, education, etc.? Does the law protect you? Dani Liptak, 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 We welcome back Trish Kean, who will lead us through a session of Shaking Qi Gong. Shaking helps us to open up our joints or energy gates and meridians allowing the free... Read More »
9:00pm ET | 8:00pm CT | 7:00pm MT | 6:00pm PT British Columbia and Alberta Chapters - Virtual Meeting When: Wednesday April 10th, 6pm PT | 7pm MT Where: Virtually via Zoom, please RSVP below to receive the Zoom link What: We are excited to have special guest Lena Graham joining us! Lena is a... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, Rick Whitehead will share his experience having surgery to reinforce weak abdominal muscles (the cause of the "pregnant belly" silhouette). We're being tongue in cheek about this being a "tummy tuck," as it's not a cosmetic procedure but... Read More »
9:00am ET | 8:00am CT | 7:00am MT | 6:00am PT NYC/NJ-area Virtual Chapter Meeting Saturday, April 6th, 2024 at 9am ET Dear Friends, Please plan to join us for our next virtual meeting, Saturday, April 6th, 2024 at 9am ET. This is the next in our series of regular bi-monthly meetings to provide... 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 will continue our discussion on what to do when your current care plan isn't working anymore. As always, expect a wealth of practical tips, sympathy, and the supportive company of awesome women.... 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 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... 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 »
7-8pm ET | 6-7pm CT | 5-6pm MT | 4-5pm PT Texas Virtual Happy Hour, Sunday, March 17, 2024 TIME: 6:00 pm - 7:00 pm CT WHERE: Virtually via Zoom Pour your favorite beverage and come here the great news - FSHD 360 is coming to Texas! Join us for a virtual happy hour where... Read More »
7PM ET | 6PM CT | 5PM MT | 4PM PT New England Chapter - Virtual Meeting Please join us for another great virtual chapter meeting! We will discuss current clinical trials, upcoming events, and formally meet Jenny Gast - our new FSHD Society Regional Director. We will also showcase some great talent from right... Read More »
7PM ET | 6PM CT | 5PM MT | 4PM PT Michigan Chapter - Virtual Meeting Please join us for a virtual chapter meeting on Tuesday, March 5, 2024, from 7pm - 8pm Eastern. No set agenda, this is simply a time for us to gather together and share our updates and adventures. RSVP via... Read More »
7:00-8:00pm ET | 6:00-7:00pm CST | 5:00-6:00pm MT | 4:00-5:00pm PT Please join us for a virtual chapter meeting on Wednesday, February 28, 2024, from 7:00pm - 8:30pm Eastern. Items we plan to cover include: 1. Meet our new FSHD Society Regional Director - Jenny Gast 2. Updates on what’s happening in the FSHD community... 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 bi-monthly meeting - to provide consistent communication and camaraderie among our group. PLEASE RSVP to receive the Zoom link. Hope to “see” you there! Warmly, David... 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 us for our upcoming chapter meeting! Anna Gilmore of FSHD Society will deliver an update re: current clinical trials and the clinical trial enrollment process.
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 guest presenter, Anna Gilmore! Anna has moved to the new position of FSHD Navigator. As Navigator, she helps families by providing resources and information to... 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 status of research in the FSHD community. Dr. Bill Lewis, FSHD Society board member, Clinical Professor of Cardiovascular Medicine at UC Davis Medical Center, and Director 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, 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 »
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 »
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 »
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 »
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 »
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 »
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 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 »
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 »
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 »
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 »
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!
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 »
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!
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 »
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 »
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!
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 »
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 »
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 »
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 »
New York City/NJ - Area Chapter Tuesday, June 13, 2023 7:00pm ET via Zoom We hope you can join us for a virtual chapter meeting! We will be discussing our plans for 2023, clinical trial updates and will be learning about our virtual communities and how to get involved with both. Pencil us in... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Change of topic! Instead of Happy Hour, this month we will enjoy another Movie Night conversation. In the early 1970s, teenagers with disabilities faced a future shaped by isolation, discrimination and institutionalization. Camp Jened, a ramshackle camp “for the handicapped”... Read More »
Connecticut Connections Reunion Wednesday, May 31st, 2023 7pm ET | 6pm CT | 5pm MT | 4pm PT Via Zoom: https://us02web.zoom.us/j/3648329628?pwd=RjAxdHFCanU1RzNtQ0Fnek4zY1hidz09 Dear friends, Please join us for a virtual reunion of the Connecticut Connections group! It’s been a long time since the group has been together. I’d like to discuss ideas for the annual summer... Read More »
Join us virtually as we launch our new Michigan Chapter! Come to meet our new Chapter Director, Cassie Harris, to get to know one another, and to find out about all the upcoming events in the area! Please RSVP to receive the zoom link: Learn more about Cassie, and sign up to receive all the... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT In the last few months, a raft of articles have been published on the topic of friendship. Some were about research on the topic, some were about new books that have just come out, and some were just reflections on... Read More »
Hello BC Friends! Please join us for a virtual meeting on May 3rd, 2023 at 6pm PT! Our guest speaker will be Dr. Jamshid Arjomand, Chief Science Officer at the FSHD Society. He will be speaking about FSHD Clinical Trial readiness, and will give a current update on FSHD therapeutic development. Come with all of... Read More »
For this All-Texas Chapter Meeting we will be joined by guest Debra Kerber from Easy Access Travel. She'll be giving us tips on accessible travel! RSVP below.
Wednesday, April 12th, 2023 7pm ET | 6pm CT | 5pm MT | 4pm PT Via Zoom: https://us02web.zoom.us/j/83644567187?pwd=MnhSd0lPTVdUQlZYYzhhQ0VCdEI1UT09 Dear friends, I’d like to invite you join me for a lively Virtual Movie Night, hosted by the New England Chapter. We’ll be watching the Red Scooter Diaries short documentary together, which features the story of one... Read More »
Nevada Virtual Chapter Meeting 7:00 PM to 8:00 PM PT Join us on Zoom as we introduce Leslie Truman as our new Nevada Chapter Director! RSVP with the link below to let us know you’re coming. We hope to see you there!
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our topic this month is all about wheelchairs. How do you know when you need one? What psychological barriers do people face in making this transition? What benefits to people experience when they decide start using one? How do you... Read More »
Wednesday, March 29th, 2023 8pm ET | 7pm CT | 6pm MT | 5pm PT Via Zoom: Invite Link Invite Link https://us02web.zoom.us/j/3648329628?pwd=RjAxdHFCanU1RzNtQ0Fnek4zY1hidz09 Dear friends, It’s been such a long time since the New Hampshire group got together for a virtual chat! Whether or not you have joined this meeting in the past, we welcome all... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we will discuss a film, I Didn’t See You There. The idea is for you to watch it ahead of time and then join us on Zoom for the discussion. But if you don't have time to see... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Let’s learn from each other by sharing great tricks for shopping for clothing, getting makeup on, selecting shoes, how to do our hair, finding shoes that we want to …and can wear, And MORE! Please... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT What does your partner need from you or someone who helps with their care? This came up a few months ago, as we talked about how to decide when one needs professional help for their partner. This conversation leads to how... Read More »
We hope you will join us for the first Chapter meeting of the year! Reconnect with old friends, and meet some new folks from our region. This will be a casual meeting, but please feel free to bring your questions, thoughts and ideas about anything you’d like to see the group do in 2023! We’re... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Calling all care partners to join us this month for a conversation about helping your loved one with self-care. This can be delicate ground as your partner wants to preserve as much independence as possible while adapting to losses in physical... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our topic this month is transitions in mobility. How do we know it’s time for an assistive device , or to switch from walker/cane to a motorized scooter or power chair? Also knowing it doesn’t... 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 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 »
