March 9 - 26 Brew Quest – A Quest to Cure FSHD Fundraising for FSHD Society Discover new breweries around the Kearny Mesa/Miramar/Mira Mesa area while supporting our organization. At each brewery, make a qualifying purchase. Grab your map and ask the brewery to stamp it (each brewery has a unique stamp) with your qualifying... Read More »
Chapter Happy Hour Sunday, March 26, 2023 3:30pm - 5:30pm CT Johnny Tamales Cantina 4647 East Sam Houston Pkwy S Pasadena, TX 77507 Please mark your calendars for the Houston-area FSHD Society Happy Hour in Pasadena! We'll be meeting up at Johnny Tamales Cantina to eat, drink and chat! This will be an informal gathering,... 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 »
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 »
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 »
Chapter Happy Hour Saturday, April 1, 2023 3:30pm - 5:30pm CT District Kitchen & Cocktails (Anderson Lane Location) 7858 Shoal Creek Blvd, Ste. B Austin, TX 78757 Please mark your calendars for the CenTex Chapter Happy Hour in Austin! We'll be meeting up at the District Kitchen & Cocktails to eat, chat, and celebrate our Tacos... Read More »
Please JOIN US for our first Chapter meeting and social gathering of 2023, and to personally welcome our new Chapter Director, Kurt Spiegel! Sunday April 2nd, 2023: 3pm - 5pm Lariat Lodge Brewing Company 12684 W Indore Pl, Littleton, CO 80127 PLEASE RSVP by March 27 to ColoradoChapter@FSHDSociety.org Appetizers and drinks will be served! We will... 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 »
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 »
Tuesday, April 11th On the 2nd Tuesday of every month, we will bring you a new episode of FSHD Radio: Community Profiles. This long-form show includes profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. In this month's community profiles episode, Tim talks with Apex Frazier. Apex is... 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 »
UPDATED: Date changed this month because of Passover 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we continue our conversations about tips for make-up, hair styling, dressing, finding cute shoes, and managing day to day challenges so that we feel our best! This is our mutual... 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!
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 »
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 “During a check-up, the doctor asked me if I was waking up with headaches. He was concerned that FSHD could be weakening my diaphragm… I started to practice special breathing exercises to... Read More »
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Special Needs Planning Beyond One Day at a Time As a special needs family, living in a perpetual state of reactivity can feel inescapable. You can only tackle the most urgent thing in front of you – and the rest... 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 »
Northeast Florida Chapter Brunch Saturday, April 22nd; 11am - 2pm Noura's Cafe, 1533 University Blvd W, Jacksonville FL 32217 Dear Friends, We hope you can join us for Saturday, April 22nd in Jacksonville, FL! We are excited to gather together in-person and meet new friends and neighbors you may not know you had! This will... 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 »
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 »
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 NOTE DATE CHANGE FROM April 27 to April 26. For the April “Feeling Fit with FSHD” workshops, Frank Hanley will present several exercises to flex, stretch and strengthen the feet, ankles, knees... 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.
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, April 27th 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 Talent Fest 2023 - Saturday, April 29th Join us April 29th at the Boise State University's Special Events Center for the 3rd Annual Idaho Talent Fest to Cure FSH Muscular Dystrophy presented by the FSHD Society Idaho Chapter, and Aesthetic Eye, PC. This competition will spotlight and celebrate many talented individuals, while raising funds and awareness for... 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 Fatigue is one of the biggest challenges we face, and many of us have come up with strategies to manage fatigue. Let's share! This is our mutual support and social group for women of all... 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 »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT In October 2022, Roche/Genentech shared with us plans to initiate a new trial called MANOEUVRE. This global Phase 2 clinical study will evaluate GYM329 (RO7204239), an investigational anti-myostatin antibody targeting muscle growth, in individuals living with FSHD (NCT05548556). We have invited... Read More »
9:00 a.m. US ET doors open | 10:00-4:00 p.m. US ET conference sessions The FSHD Society, in collaboration with the University of Rochester Medical Center, is hosting this year’s Rochester FSHD 360 conference. The University of Rochester is an epicenter for FSHD research in the U.S. in its role as the data hub for the... Read More »
