CenTex Virtual Chapter Meeting
Zoom Virtual Meeting , United StatesCenTex 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!
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Virginia Chapter virtual monthly meeting
Zoom Virtual Meeting , United StatesPlease 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 »
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FSHD Radio: Hot off the Press – Max Adler, Walk & Roll Team Captain
Facebook and YouTubeThursday, 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 »
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Feeling Fit with FSHD
Feeling Fit with FSHD – Sharing strategies
Zoom Virtual Meeting , United States18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Ruth Hereford from the Midlands Muscular Dystrophy Centre and a long-time champion of the benefits of exercise for FSHD will lead a discussion today on "sharing strategies from nutrition to transition." Our... Read More »
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FSHD University – FSHD Experiences: Insights from Europe
Zoom Web Conference , United States1:00 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
Zoom Virtual Meeting , United StatesSan 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 »
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Young Professionals
Young Professionals – Creative Corner
Zoom Virtual Meeting , United States11:00 am ET | 10:00 am CT | 9:00 am MT | 8:00 am PT Are you an artist with FSHD? Join us for a discussion about the joys and challenges of creating while living with FSHD. We welcome creative types and artists of all mediums as well as anyone just interested in the topic.... Read More »
Connecticut Chapter Annual Luncheon
On the Border Mexican Grill & Cantina 1519 Silas Deane Highway, Rocky Hill, CT, United StatesConnecticut 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!
North Carolina Chapter “Fourth Mondays”
Zoom Virtual Meeting , United StatesDear friends, Welcome to the "Fourth Monday" 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 »
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CarePartner Hour
CarePartner Hour
Zoom Virtual Meeting , United States8:00 – 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
Virtual TX, United StatesNorth 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 this link to join. Hope to see you... Read More »
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British Columbia Walk & Roll
The Pint 455 Abbott St., Vancouver, British Columbia, CanadaBritish 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 »
North Texas Virtual Chapter Meeting
Virtual Denver, United StatesNorth 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 »
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Women on Wellness
Women on Wellness – Advance care planning
Zoom Virtual Meeting , United StatesFirst Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Chaplain Deb Calhoun The Women on Wellness September 6th discussion will be on important documents we all need to consider. These are Advanced Directives, Living Will, Durable Power of Attorney for Healthcare and Finance. Our... Read More »
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Alberta Walk & Roll
RiverWalk Plaza 618 Confluence Way SE, Calgary, Alberta, CanadaAlberta 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 »
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Colorado Walk & Roll
Philip S. Miller Park - Amphitheater 1375 E Plum Creek Pkwy, Castle Rock, CO, United StatesColorado 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 »
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Pacific Northwest Walk & Roll
Cockrell Cider 6613 114th Ave Ct E, Puyallup, WA, United StatesPacific 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 »
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Wellness Hour – Preventing Falls
Zoom Virtual Meeting , United States5:00 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 »
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Young Professionals
Young Professionals – Genetic Counseling & Family Planning with Julie Cohen
Zoom Virtual Meeting , United States8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Julie Cohen Mark your calendar and join us for a discussion on genetic counseling and family planning with Julie Cohen, ScM, CGC. Julie Cohen is the Director of Genetic Counseling Services at the Kennedy Krieger Institute and is also part... Read More »
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FSHD Radio: Community Profiles – Jenny and Tony Teel, Thriving in an Interabled Marriage
Facebook and YouTubeTuesday, 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 »
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Feeling Fit with FSHD
Feeling Fit with FSHD – Anniversary workout
Zoom Virtual Meeting , United States18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT September marks the one-year anniversary of the “Feeling Fit” program. This month, Frank Hanley returns and will provide a brief recap of the many milestones the program reached this past year and... Read More »
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Arizona Walk & Roll
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 »
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Ontario Walk & Roll
Lake Aquitaine Park 6655 GLEN ERIN DR, Mississauga, Ontario, CanadaOntario 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 »
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Chicago Walk & Roll
Citizen's Park - Amphitheatre 511 N Lake Zurich Rd, Barrington, IL, United StatesChicago 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 »
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NE Florida Walk & Roll
121 Financial Ballpark 301 A. Philip Randolph Boulevard, Jacksonville, FL, United StatesNE 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 »
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Los Angeles Walk & Roll
Woodley Park 6076 Woodley Ave, Encino, CA, United StatesLos 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 »
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Early-Onset Parent Roundtable
Early-Onset Parent Roundtable – Accessible Driver’s License and Modified Vehicles
Zoom Virtual Meeting , United States8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT The community has shown interest in learning more about resources for modified vehicles and accessible driving licenses. Please join us for a conversation about accessible vehicles for individuals that need modifications to drive. Ally Roets will talk about her son's... Read More »
Western PA Drum & Roll Planning Meeting (Virtual)
Zoom Virtual Meeting , United StatesWestern 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!
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FSHD University – Physical Therapy for Shoulder Issues in Kids
Zoom Web Conference , United States1:00 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 »
North Carolina Chapter “Third Thursdays”
Zoom Virtual Meeting , United StatesDear 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 »
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International Walk & Roll Celebration with FSHD Radio
National Virtual Walk , United States10:00 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 »
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Columbus Walk & Roll
Coffman Park Pavillion 5200 Emerald Pkwy, Dublin, OH, United StatesColumbus 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 »
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Intermountain Walk & Roll
Canyon Rim Park East Pavillion 3100 S Grace Street, Millcreek, UT, United StatesIntermountain 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 »
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St. Louis Walk & Roll
Hawk Ridge Park 8392 Orf Road, Lake St. Louis, MO, United StatesSt. 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 »
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Young Professionals
Young Professionals – Nutrition and FSHD
Zoom Virtual Meeting , United States11:00 am ET | 10:00 am CT | 9:00 am MT | 8:00 am PT How does nutrition impact the symptoms and progression of FSHD? This week, the group will discuss a webinar recorded in September 2022 about nutrition and FSHD. Watch the video in advance and compare notes and thoughts with us! The webinar,... Read More »
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Canceled Virginia Walk & Roll
Norfolk Zoo 3500 Granby St., Norfolk, United StatesVirginia 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 »
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Canceled Mid-Atlantic Walk & Roll
Alpha Ridge Park 11685 Old Frederick Rd, Marriottsville, MD, United StatesMid-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 »
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Minnesota Walk & Roll
Mount Normandale Lake Bandshell 5901 West 84th Street, Bloomington, MN, United StatesMinnesota 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 »
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Bay Area Walk & Roll
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 »
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West Michigan Walk & Roll
Mulligan's Hollow Lodge 600 Y Drive, Grand Haven, MI, United StatesWest 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 »
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North Texas Walk & Roll
Warren Sports Complex 7599 Eldorado Parkway, Frisco, TX, United StatesNorth 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 »
Virginia Chapter virtual monthly meeting
Zoom Virtual Meeting , United StatesPlease 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 »
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CarePartner Hour
CarePartner Hour
Zoom Virtual Meeting , United States8:00 – 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
Virtual TX, United StatesNorth 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 this link to join. Hope to see you... Read More »
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FSHD Radio: Hot off the Press – Mel Hayes of Fulcrum Therapeutics on the REACH Trial
Facebook and YouTubeThursday, 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 »
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Feeling Fit with FSHD
Feeling Fit with FSHD – Why exercise?
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 for our second session of the month, “Why Exercise?” led by Frank Hanley. In this session, Frank will share the ins and outs of his struggle with FSHD and his... Read More »
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CenTex Walk & Roll
Champion Park 3830 Brushy Creek Rd, Cedar Park, TX, United StatesCenTex 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 »
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San Diego Walk & Roll
Harbor Island Park 1875 Harbor Island Dr., San Diego, CA, United StatesSan 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 »
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Kansas City Walk & Roll
Macken Park 1002 Clark Ferguson Dr., North Kansas City, MO, United StatesKansas 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 »
North Texas Virtual Chapter Meeting
Virtual Denver, United StatesNorth 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 »
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Women on Wellness
Women on Wellness – Adaptive cooking
Zoom Virtual Meeting , United StatesFirst 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 month. We'd like to share different ways of cooking and/or providing the necessary nutrients we need daily. Come and join us! This is our mutual... Read More »
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New England Walk & Roll
Optum Building Rooftop 1325 Boylston Street, Boston, MA, United StatesNew 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 »
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Wellness Hour on Emergency Preparedness
Zoom Virtual Meeting , United States5:00 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 »
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FSHD Radio: Community Profiles with Donna Russo – Actress, Dancer, Choreographer
Facebook and YouTubeTuesday, 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 »
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Young Professionals
Young Professionals – Financial planning
Zoom Virtual Meeting , United States8:00 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 career in the federal government. "It would be an honor to share my insights from a 25 year learning journey to be able to retire... Read More »
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Feeling Fit with FSHD
Feeling Fit with FSHD – Finding your balance
Zoom Virtual Meeting , United States19:00 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 with clients on improving balance. She was recommended to us by a person with FSHD. She will share her knowledge and exercise tips at this... Read More »
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Pacific Northwest FSHD 360
The Museum of Flight 9404 East Marginal Way S, Seattle, WA, United States9:00 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 »
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Atlanta Walk & Roll
Chattahoochee Nature Center 9135 Willeo Rd, Roswell, GA, United StatesAtlanta 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 »
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Early-Onset Parent Roundtable
Early-Onset Parent Roundtable – Pediatric FSHD Summit
Zoom Virtual Meeting , United States8:00 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, sponsored by Solve FSHD, discussed knowledge gaps in the understanding of FSHD in children and teens, trial readiness for pediatric trials, and strategies for ensuring... Read More »
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FSHD University: MOVE and MOVE+ Update
Zoom Web Conference , United States1:00 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 »
North Carolina Chapter “Third Thursdays”
Zoom Virtual Meeting , United StatesDear 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 »
Colorado Chapter Meeting
Lansdowne Arms 9352 Dorchester St., Highlands Ranch, CO, United StatesSunday, 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 »
Virginia Chapter virtual monthly meeting
Zoom Virtual Meeting , United StatesPlease 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
Virtual TX, United StatesNorth 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 this link to join. Hope to see you... Read More »
Connecticut Chapter Virtual Meeting
Zoom Virtual Meeting , United StatesConnecticut 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!
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FSHD Radio: Hot off the Press with the FSHD Navigator
Facebook and YouTubeThursday, 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 »
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Feeling Fit with FSHD
Feeling Fit with FSHD – Finding your balance part 2
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 recommendations for improving balance. For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of... Read More »
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Canceled Putting Fore a Cure
Wildhorse Golf Club 2100 W Warm Springs Rd, Henderson, NV, United StatesPutting 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 »
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Young Professionals
Young Professionals: Managing Symptoms
Zoom Virtual Meeting , United States11:00 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: Alberta Chapter Brunch and Gathering
Tiramisu Bistro 10750 124 St. NW, Edmonton, AB, Canada** 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 »
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New Jersey Shore Walk & Roll
Seaside Heights Boardwalk 1599 Boardwalk, Seaside Heights, NJ, United StatesNew 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 »
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Feeling Fit with FSHD
Feeling Fit with FSHD
Zoom Virtual Meeting , United States18:00 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 »
Thanksgiving Special
Virtual TX, United StatesJoin 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 »
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Women on Wellness
Women on Wellness – Wheelchairs
Zoom Virtual Meeting , United StatesFirst 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 think about using one, how to get the right one, how will insurance pay for it (or not)…. And transporting the wheelchair after you procure... Read More »
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CarePartner Hour
CarePartner Hour
Zoom Virtual Meeting , United StatesPlease 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 | 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.... Read More »
Sacramento Chapter Meeting
Zoom Virtual Meeting , United StatesEVENT: 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
Wissahickon Valley Public Library, Community Room 650 Skippack Pike - Blue Bell, Blue Bell, PA, United StatesGreater 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
Free
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Western PA Drum & Roll to Cure FSHD
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 »
North Texas Virtual Chapter Meeting
Virtual Denver, United StatesNorth 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 »
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Feeling Fit with FSHD
Feeling Fit with FSHD – Holistic paths to wellness
Zoom Virtual Meeting , United States18:00 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 UPDATE - This month's discussion leader is Rita Lynn. She will lead a meditation exercise and then we will watch and participate in exercises that... Read More »
Mid-Atlantic Chapter Meeting
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 »
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Ohio FSHD 360
Fawcett Center 2400 Olentangy River Road, Columbus, OH, United States9:00 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 »
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Wellness Hour – Finding reliable health info on the Internet
Zoom Virtual Meeting , United States5:00 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 »
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FSHD Radio: Community Profiles – Jane Nemke, Founder of Designs to Thrive
Facebook and YouTubeTuesday, November 14th 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 her inspiring journey into Universal Design as a means to create flexible and age-friendly living spaces, driven by her personal experience with FSHD. Through the... Read More »
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Magic for a Cure (Naples, FL)
The Pointe at Naples Bay Resort 1500 Fifth Avenue South, Naples, FL, United StatesMagic 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 »
North Carolina Chapter “Third Thursdays”
Zoom Virtual Meeting , United StatesDear 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 »
Michigan Chapter Meeting
Zoom Virtual Meeting , United StatesMeeting 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 »
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Young Professionals
Young Adults – Clinical trial updates
Zoom Virtual Meeting , United States8:00 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 current and future clinical trials for FSHD. Robert Ro will share his clinical trial experiences. FSHD Young Professionals is a social and support group focused... Read More »
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Feeling Fit with FSHD
Feeling Fit with FSHD – Holistic paths to wellness part 2
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 We welcome back Rita Lynn who will lead a meditation exercise and introduce some yoga positions that can be done while seated. After her diagnosis... Read More »
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Early-Onset Parent Roundtable
Early-Onset Parent Roundtable with Eva Chin of Solve FSHD
Zoom Virtual Meeting , United States8:00 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 Solve FSHD, a Canadian company that is focused on accelerating the development of treatments for FSHD. Solve FSHD hosted the pediatric FSHD summit this past... Read More »
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FSHD Radio Thanksgiving Special
Virtual Denver, United StatesJoin 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 »
Virginia Chapter virtual monthly meeting
Zoom Virtual Meeting , United StatesPlease 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 »
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CarePartner Hour
CarePartner Hour
Zoom Virtual Meeting , United States8:00 – 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
Virtual TX, United StatesNorth 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 this link to join. Hope to see you... Read More »
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FSHD Radio: My Cause, My Cleats with Emma Weatherley
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 »
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FSHD Radio: Emma Weatherley
Virtual Denver, United StatesFSHD 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
Virtual Denver, United StatesNorth 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 »
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Women on Wellness
Women on Wellness – Estrogen & FSHD
Zoom Virtual Meeting , United StatesFirst 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 obstetrics and gynecology at the University of Rochester. She is a co-author of the pregnancy and reproductive medicine section of the forthcoming international care guideline... Read More »
Nevada Chapter Holiday Meeting
Zoom Virtual Meeting , United StatesDate 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 »