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. We'll be sharing our concerns about our families' future needs as well as solutions and ideas that have helped. This virtual meeting is a... Read More »
North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday 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! At meeting time, please click this link to join. Hope to see you... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT We're In This Together During this time of self-isolation because of the covid-19 crisis, it's important to stay connected. Join FSHD Radio show host Tim Hollenback every Wednesday evening on Facebook Live for an open-ended conversation about whatever is on... Read More »
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 for exercise and have on hand any... Read More »
Thursday, October 27th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society,... 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 »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month's topic is Self-Compassion, with an emphasis on providing support for the many of us who are single, without family in our areas, and being alone during any holiday. Ora Prilleltensky or a colleague... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT We're In This Together During this time of self-isolation because of the covid-19 crisis, it's important to stay connected. Join FSHD Radio show host Tim Hollenback every Wednesday evening on Facebook Live for an open-ended conversation about whatever is on... Read More »
Please mark your calendars for the 2022 Central Texas Tacos & Tunes to Cure FSHD Celebration! We will see you on Saturday, November 5, 2022 Please reach out to Ashley Bryan with any questions! She can be reached at ashleybryan1@gmail.com
Please mark your calendars for the 2022 East Tennessee Walk & Roll to Cure FSHD! We will see you on Saturday, November 5, 2022 Please reach out to the Walk Leader, Candice Norman, with any questions! She can be reached at EastTNChapter@FSHDSociety.org. We look forward to seeing you on November 5!
The Western PA Drum & Roll Mark your calendars: The second annual Drum & Roll will take place on Saturday, November 5th, 2022! We invite you to join us in raising funds, awareness, and celebrating coming together as a community again this fall. In this unique event, participants will learn and enjoy a mobility-device-friendly West African... Read More »
Tuesday, November 8th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT We're In This Together During this time of self-isolation because of the covid-19 crisis, it's important to stay connected. Join FSHD Radio show host Tim Hollenback every Wednesday evening on Facebook Live for an open-ended conversation about whatever is on... Read More »
12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT In the November “Feeling Fit” sessions, Frank Hanley will introduce a variety of neck and shoulder exercises and review the qigong breathing techniques and abdominal (core) exercises that he presented in the September sessions. Frank Hanley is a martial... Read More »
9:00 AM - 4:05 PM Central Time The FSHD Society, in collaboration with our Kansas chapter and the University of Kansas Medical Center, is hosting this year’s Kansas City FSHD 360 conference. The University of Kansas is the epicenter of FSHD research in the U.S. in its role as the coordinating center for the international... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT As the weather gets colder (at least in the northern hemisphere), we turn to a subject that is the bane of many person with FSHD: keeping warm. Not to mention those unfortunate hazards of freezing weather, snow and ice. Loss... Read More »
PLEASE JOIN US for the Second Annual "Magic for a Cure" for FSH Muscular Dystrophy (FSHD) featuring Celebrity Magician John Stessel @ The Kolo Klub (at the Pilsener Haus Biergarten) in Hoboken, NJ Tuesday, November 15th 2022 Buy Tickets and/or Sponsorships
Tuesday, November 15th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT We're In This Together During this time of self-isolation because of the covid-19 crisis, it's important to stay connected. Join FSHD Radio show host Tim Hollenback every Wednesday evening on Facebook Live for an open-ended conversation about whatever is on... Read More »
Thursday, November 17th On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every 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 on all things... Read More »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Jeffrey Statland, MD This is an unprecedented time for FSHD therapy development. Fulcrum Therapeutics is recruiting for its Phase 3 clinical trial of losmapimod. Dyne Therapeutics and Avidity Biosciences are among several companies that are on the verge of launching... Read More »
12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT In the November “Feeling Fit” sessions, Frank Hanley will introduce a variety of neck and shoulder exercises and review the qigong breathing techniques and abdominal (core) exercises that he presented in the September sessions. Did you try these exercises... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT We're In This Together During this time of self-isolation because of the covid-19 crisis, it's important to stay connected. Join FSHD Radio show host Tim Hollenback every Wednesday evening on Facebook Live for an open-ended conversation about whatever is on... Read More »
The Western Washington FSHD Community Group invites you to join them virtually, every month on the 4th Saturday via Zoom web conference: Join Zoom Meeting from your computer or tablet: https://zoom.us/j/154396011 Or by Phone: 669 900 6833, Meeting ID: 154 396 011 Questions? Please contact: BobLouden@yahoo.com We look forward to “seeing” you there!
Tim Hollenback, FSHD Radio host #GivingTuesday is a global generosity movement unleashing the power of people and organizations to transform their communities and the world. On Tuesday, November 29th, we will celebrate with an all-day Radiothon event via Facebook Live! FSHD Radio host, Tim Hollenback, will host guests non-stop from 11am-8pm Eastern/8am-5pm Pacific on Facebook@FSHDSociety.... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Our topic this month: How do we decide when/if we need outside help either part time or live-in? It's a big step and not everyone in the family be on the same page. Are you approaching this decision point or in... Read More »
North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday 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! At meeting time, please click this link to join. Hope to see you... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT We're In This Together During this time of self-isolation because of the covid-19 crisis, it's important to stay connected. Join FSHD Radio show host Tim Hollenback every Wednesday evening on Facebook Live for an open-ended conversation about whatever is on... Read More »
Philadelphia Chapter Meeting Saturday, Dec. 3rd, 2022 10am – 12pm ET Wissahickon Valley Public Library, 650 Skippack Pike, Blue Bell PA 19422 (Zoom line for those who need to call in): https://us02web.zoom.us/j/87939719109?pwd=TkJIWCt0RWtTWVU4cGtRNmxPcHlsZz09 We hope you will join us for the next meeting of the Greater Philadelphia Chapter! In our September meeting, there was a lot... Read More »
As 2022 comes close to an end, we want to celebrate this amazingly hopeful year with YOU! Please join us for some fun! WHEN: Saturday, December 3th, 2022 12pm – 2pm WHERE: Napoli's Restaurant - 2865 McDermott Rd. #235 Plano, TX 75025 WHO: YOU and your family, and all of our friends who are travelling the FSHD journey... Read More »
Please join us for appetizers and drinks! WHEN: Sunday December 4th, 2022 4pm – 6pm WHERE: Brothers Bar & Grill – 7407 Park Meadows Drive, Lone Tree CO 80129 WHO: YOU and your family, and all of our friends who are travelling the FSHD journey WHAT: While we catchup with one another and enjoy food and beverages, we’ll get... 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 »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month we'll be talking about "mattering," feeling valued as a woman, while living with the challenges of FSHD. We will also discuss depression, the potential high prevalence in individuals with chronic diseases -identifying signs and symptoms,... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT We're In This Together During this time of self-isolation because of the covid-19 crisis, it's important to stay connected. Join FSHD Radio show host Tim Hollenback every Wednesday evening on Facebook Live for an open-ended conversation about whatever is on... Read More »
12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT “FSHD is always attacking me… it never takes a day off. I practice qigong and kung fu daily. It’s my way to fight back.” -FH In the December “Feeling Fit” sessions, Frank Hanley will introduce several qigong exercises to... Read More »
As 2022 comes close to an end, we want to celebrate this amazingly hopeful year with YOU! Please join us for coffe and treats at a casual end-of-year get together! WHEN: Saturday December 10th, 2022 at 11am WHERE: Starbucks - 43 Milner Ave. Unit 2, Scarborough, ON M1S 3P6 WHO: You and your family, and... Read More »
Please join us for a Chapter Meeting and Holiday Party! Light refreshments and beverages will be provided. Researchers from the Avidity Team will offer tours of their laboratories, where the team is actively working on advancing treatment options for the FSHD community. If you would like to... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, you're invited to come dressed in Zoom-worthy holiday apparel, with favorite seasonal libations in hand! The Wellness Hour is open to everyone in the FSHD community. We'll have an open-ended conversation about how group members would like to... Read More »
Tuesday, December 13th Join us for the last FSHD Radio Show of 2022! For this special episode, join Tim and FSHD Society's CEO, Mark Stone as they discuss all that has happened in the FSHD community this past year. Mark will be sharing exciting updates that have happened in FSHD research and development in 2022,... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT We're In This Together During this time of self-isolation because of the covid-19 crisis, it's important to stay connected. Join FSHD Radio show host Tim Hollenback every Wednesday evening on Facebook Live for an open-ended conversation about whatever is on... Read More »
1:00 pm ET | noon CT | 11:00 am MT | 10:00 am PT | 18:00 GMT | 19:00 CET Everyone in the FSHD world has a role to play in getting our community to be "trial ready." The FSHD Society's website is your portal to trial readiness. Many of you may not realize the... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT We're In This Together During this time of self-isolation because of the covid-19 crisis, it's important to stay connected. Join FSHD Radio show host Tim Hollenback every Wednesday evening on Facebook Live for an open-ended conversation about whatever is on... Read More »
12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT In the December “Feeling Fit” sessions, Frank Hanley will introduce several qigong exercises to help strengthen the immune system and improve qi flow. These exercises build on the abdominal breathing exercises that Frank introduced in September, and reviewed during... Read More »
The Western Washington FSHD Community Group invites you to join them virtually, every month on the 4th Saturday via Zoom web conference: Join Zoom Meeting from your computer or tablet: https://zoom.us/j/154396011 Or by Phone: 669 900 6833, Meeting ID: 154 396 011 Questions? Please contact: BobLouden@yahoo.com We look forward to “seeing” you there!
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 »
North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday 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! At meeting time, please click this link to join. Hope to see you... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT We're In This Together During this time of self-isolation because of the covid-19 crisis, it's important to stay connected. Join FSHD Radio show host Tim Hollenback every Wednesday evening on Facebook Live for an open-ended conversation about whatever is on... 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 »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We will continue the conversation that we started last month on depression. We'll also use this time to assess our group and what we'd like to accomplish in 2023. This is our mutual support and... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT We're In This Together During this time of self-isolation because of the covid-19 crisis, it's important to stay connected. Join FSHD Radio show host Tim Hollenback every Wednesday evening on Facebook Live for an open-ended conversation about whatever is on... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Have you experienced pain as part of your FSHD? What has helped? What are your continuing challenges? Are you familiar with multidisciplinary approaches to managing pain? This month's conversation is an opportunity to seek and share advice on pain management.... Read More »
Tuesday, January 10th On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. To kick off the new season, we turn the tables... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT We're In This Together During this time of self-isolation because of the covid-19 crisis, it's important to stay connected. Join FSHD Radio show host Tim Hollenback every Wednesday evening on Facebook Live for an open-ended conversation about whatever is on... Read More »
12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Lonwabo Nene Join us this month as Lonwabo Nene explains his physical rehab journey and how certain movements - when targeted at problem areas - have had a positive net effect in helping him manage his muscular dystrophy. Lonwabo is... Read More »
Tuesday, January 17th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as... 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 »
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 looking forward to catching up with everyone, and sharing our updates... Read More »
Saturday, January 21, 2023 10:00-11:00am Eastern Time Join us via Zoom HERE 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... Read More »
Chapter Meeting Sunday, January 22, 2023 1:00pm - 3:00pm Pacific Time Stanford University, Center for Academic Medicine, Grand Rounds Room 125 453 Quarry Road, Palo Alto, CA 94304 Our January 22, 2023 San Francisco Bay Area Chapter of the FSHD Society will be our Kick Off meeting for 2023. We look forward to seeing everyone... 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! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join... Read More »
North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday 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! At meeting time, please click this link to join. Hope to see you... Read More »
Thursday, January 26th On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every 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 on all things... Read More »
12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Lonwabo Nene Join us for Q&A and discussion to follow up on Lonwabo Nene's physical rehab journey. Lonwabo is an active member within the disability awareness sector. He was diagnosed with FSHD at the young age of 15 and... 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 »
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 »
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 »
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 physiotherapist Ulrike Uta of the Muscular Dystrophy Support Centre (MD Support Centre) in Coventry, UK, for today's session. Posture changes are normal for people living with FSHD. They are caused... Read More »
February 11, 2023 2:00pm – 4:30 pm Join us for this informative discussion about trials while sipping on a special pre-Valentine’s Day cocktail (N/A available) celebrating FSHD. Have you wondered about participating in a trial? Are you involved in a trial? Come join us to discuss the requirements and how you can prepare for... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month we will be joined by crisis counselors Kylee Helmke and Andrea Morales to discuss mental health issues that affect the FSHD community. Depression is not uncommon, and too many families have been devastated by suicide. This is a... Read More »
Tuesday, February 14th On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. This month’s guest is Paul Ronson of Suffolk, England, a radio... Read More »
Learn about the FDA's recent fast track designation for Avidity's FSHD therapeutic here. 1:00 pm ET | noon CT | 11:00 am MT | 10:00 am PT | 18:00 GMT | 19:00 CET Avidity Biosciences has announced its plans to launch FORTITUDE, a Phase 1 / 2 clinical trial in FSHD of the novel compound... Read More »
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 looking forward to catching up with everyone, and sharing our updates... Read More »
Dear Friends, Please mark your calendars for a get-together in Tampa! We'll be meeting up at the True Food Kitchen, and if the weather is nice enough, we'll enjoy our time together out on the patio. This will be an informal gathering, with no particular agenda - but we'd love to hear your ideas or... Read More »
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as possible. We will... Read More »
North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday 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! At meeting time, please click this link to join. Hope to see you... Read More »
Thursday, February 23rd On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every 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 on all things FSHD.... 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 Ulrike Uta will join us to discuss the experiences of the February 9 exercise class and answering questions. We can revisit some exercises to discuss in more detail. We all move... Read More »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT | 18:00 UK | 19:00 CET Dr. Rita Perlingeiro Our webinar speaker is Dr. Rita Perlingeiro, Associate Professor of Medicine within the Lillehei Heart Institute at the University of Minnesota. Her primary research interests include understanding the molecular mechanisms controlling... Read More »
Saturday, February 25, 2023 10:00am ET Please join us for our first Chapter meeting of 2023! Grab a cup of coffee and join us for a casual discussion and Q&A with other members of our Ontario FSHD Community. Time to reconnect with old friends. meet new ones, and help us plan for the year. Hope... 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! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Our topic this month is continuing last month's talk about How do we take care of ourselves? How do we get outside help for our partner when needed? This monthly meeting is for those of you who are providing care 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 »
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 conversations about Challenges (and over coming them!) with Shoes, Dressing, Makeup, Hair and Appearance specifics. Yielding-Feeling good about our appearance. This is our mutual support and social group for women... 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 »
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 “FSHD is always attacking me… it never takes a day off. I practice qigong and kung fu daily. It’s my way to fight back.” - Frank Hanley Frank Hanley returns to lead... Read More »
Please join us for the first Alberta Chapter Meeting (virtual) on Sunday, March 12th at 10:00am MT via ZOOM! Please RSVP! Come and meet the Chapter Co-Directors, Jennie and Karen Camarta, and hear about our exciting plans to build the FSHD Community in Canada as we prepare for upcoming clinical trials. You can get the latest information about... 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 »
Tuesday, March 14th On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. This month, our Community Profiles guest is entrepreneur and philanthropist... Read More »
7:00 pm ET | 6:00 pm CT | 5:00 pm MT | 4:00 pm PT 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 to connect, collaborate, and provide networking opportunities. Whether you’re just graduating, starting a... Read More »
Join us for the first official meeting as the new BC Chapter of the FSHD Society! We will meet virtually on Wednesday, March 15th 2023 at 7pm PT. Please RSVP to receive the zoom link. Come meet the Chapter Co-Directors, Priscilla Sharun and Cheryl Hooge. Our special guest for this meeting is Neil Camarta, the founder... Read More »
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 looking forward to catching up with everyone, and sharing our updates... Read More »
Come meet us! East TN Chapter Meeting Tuesday, March 21, 2023 5:00pm - 6:00pm Eastern Time Cedar Bluff Branch Library Cedar Bluff Meeting Room 9045 Cross Park Drive Knoxville, TN 37923 Dear friends, Please pencil us in for an in-person chapter meeting! We are so excited to get the group back together again to... Read More »
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as possible. We will... Read More »
Thursday, March 23rd On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every 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 on all things FSHD.... 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 “FSHD is always attacking me… it never takes a day off. I practice qigong and kung fu daily. It’s my way to fight back.” - Frank Hanley This part 2 of Frank... Read More »
1:30 PM ET | 12:30 PM CT | 11:30 AM MT | 10:30 AM PT Nizar Saad, PhD Nizar Saad, PhD is an assistant professor at the Center for Gene Therapy at Nationwide Children’s Hospital. Dr. Saad worked on FSHD for several years in the laboratory of Scott Harper, PhD, and has been involved in... Read More »
11:00 am ET | 10:00 am CT | 9:00 am MT | 8:00 am PT 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 to connect, collaborate, and provide networking opportunities. Whether you’re just graduating, starting a... Read More »
Come meet us! Greater Philadelphia Chapter Meeting Saturday, March 25, 2023 10:00am - 12:00pm Eastern Time Wissahickon Valley Public Library 650 W Skippack Pike Blue Bell, PA 19422 Or via Zoom: Click here to join Dear friends, Please pencil us in for the next chapter meeting! This will be an informal gathering, and if you have... Read More »
Chapter Happy Hour Saturday, March 25, 2023 11:30am - 1:30pm CT Down South Kitchen & Bakery 6500 Cascades CT Ste. 100 The Colony, TX 75056 Dear Friends, Please mark your calendars for the NorTex Chapter Happy Hour in The Colony! We'll be meeting up at the Down South Kitchen & Bakery to eat, chat, and... Read More »
