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29 events found.

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July 2024

Mon 8
FSHD Wellness Hour
Featured Featured Jul 8, 2024 @ 4:00 pm - 5:00 pm Event Series Wellness Hour (Virtual Meeting)

Wellness Hour – Adapting your home

Zoom Virtual Meeting , United States

5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month's Wellness hour features In Home Preferred, an innovative company run and managed by […]

Tue 9
Featured Featured Jul 9, 2024 @ 8:00 am Event Series FSHD Radio: Straight Talk with Tim Hollenback

FSHD Radio: Straight Talk with Tim Hollenback

Facebook and YouTube

In this episode of FSHD Straight Talk, host Tim Hollenback talks with George Pollock, longtime member of the FSHD Society Board of Directors and a powerful advocate FSHD treatments. Join […]

Wed 10
FSHD WOW Monthly Meeting
Featured Featured Jul 10, 2024 @ 4:00 pm - 5:00 pm Event Series Women on Wellness

Women On Wellness – Vacation obstacles

Zoom Virtual Meeting , United States

First Wednesday of every month* 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT *Note we have changed the date to July 10 due […]

Thu 11
Feeling Fit with FSHD banner
Featured Featured Jul 11, 2024 @ 11:00 am - 12:00 pm Event Series Feeling Fit with FSHD

Feeling Fit with FSHD – Breathwork Part 3

Zoom Virtual Meeting , United States

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 In PART  3 of the “Feeling Fit”  […]

Mon 15
Featured Featured Jul 15, 2024 @ 8:00 pm - 9:00 pm Event Series Young Professionals

Young Adults – Building community

Zoom Virtual Meeting , United States

8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT This month, we invite everyone in the Young Adults community to join a conversation about […]

Tue 16
Featured Featured Jul 16, 2024 @ 8:00 pm - 9:00 pm Event Series Parent Roundtable

Early-Onset Parent Roundtable – Connect recap

Zoom Virtual Meeting , United States

8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT This year's FSHD Connect, held on June 15-16, had activities and breakouts dedicated to pediatric […]

Thu 18
Featured Featured Jul 18, 2024 @ 1:00 pm - 2:00 pm

FSHD University – Better Nutrition for FSHD

19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT rpt The foods you eat impact your disease and […]

Tue 30
Featured Featured Jul 30, 2024 @ 8:00 pm - 9:00 pm Event Series CarePartner Hour

CarePartner Hour

Zoom Virtual Meeting , United States

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 […]

Wed 31
Featured Featured Jul 31, 2024 @ 7:00 pm - 8:00 pm Event Series 2024 W&R

Team Captain Rally & Social Hour

Zoom Virtual Meeting , United States

7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Team Captain Rally & Social Hour Wednesday, July 31st Join us for our annual Team Captain Rally where we […]

August 2024

Thu 15
Danny Kurtzman, right, as Danny, and Brett Dier, as Jason, in Shane Stanger's "Good Bad Things"
Featured Featured Aug 15, 2024

Good Bad Things Theatrical Premiere

Theaters Near You

Good Bad Things Theatrical Premiere For nearly a year, we’ve been following the journey of "Good Bad Things," and now, the award-winning film starring Danny Kurtzman, who lives with FSHD, […]

Mon 19
Featured Featured Aug 19, 2024 @ 9:00 am - 6:00 pm

The Muscle to Keep Life Moving

The Cape Club of Sharon 25 Tiot Street Sharon, MA 02067 Tiot Street, Sharon, MA, United States

The Muscle to Keep Life Moving™ Monday, August 19, 2024 9:00am-6:00pm ET The Cape Club of Sharon: 25 Tiot St, Sharon MA 02067 The FSHD Society is pleased to partner […]

Thu 29
Featured Featured Aug 29, 2024 @ 1:00 pm - 2:00 pm

FSHD University: BetterLife FSHD with Amanda Hill

Zoom Web Conference , United States

19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT BetterLife FSHD We are thrilled to announce the premiere […]

September 2024

Thu 19
Featured Featured Sep 19, 2024 @ 1:00 pm - 2:00 pm

FSHD University: Insurance Coverage for Costly Rare-Disease Treatments

Zoom Web Conference , United States

19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Insurance Coverage for Costly Rare-Disease Treatments As FSHD is […]

October 2024

Fri 4
Everything Early Onset FSHD Event
Featured Featured Oct 4, 2024 @ 7:00 pm - 8:00 pm Event Series Everything Early Onset

Everything Early Onset – Life Hacks

First Friday of every month 8:00 p.m. ET | 7:00 p.m. CT | 6:00 p.m. MT | 5:00 p.m. PT Do you have any unique strategies to cope with the […]

Sat 5
Featured Featured Oct 5, 2024 @ 9:00 am - 4:30 pm

Kansas City FSHD 360

Merriam Community Center 6040 Slater St, Merriam, KS, United States

9:00 CT doors open. Conference 10:00 a.m. to 4:30 p.m. CT Lunch will be provided Our 2024 FSHD 360 in the Kansas City area is hosted by Dr. Jeffrey Statland […]

Thu 17
Featured Featured Oct 17, 2024 @ 1:00 pm - 2:00 pm

FSHD University: Good Bad Things

Zoom Web Conference , United States

19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Good Bad Things Actor and screenwriter Danny Kurtzman and […]

November 2024

Sat 2
Featured Featured Nov 2, 2024 @ 11:00 am - 4:00 pm

New England FSHD 360

University of Massachusetts Medical Center Plantation Street, Worcester, Massachusetts, United States

Co-hosted by the UMass Wellstone Center for FSHD and the FSHD Society FSHD research and drug development is in a new era. Do you know what’s happening and how this […]

Thu 21
Featured Featured Nov 21, 2024 @ 1:00 pm - 2:00 pm

FSHD University: ReSolve – What We Have Learned

Zoom Web Conference , United States

19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT ReSolve – What We Have Learned Presented by Kate […]

Thu 28
Featured Featured Nov 28, 2024 @ 8:00 am

2024 FSHD Straight Talk Thanksgiving Special

It's our annual Thanksgiving Special and this year we're featuring musicians living with FSHD. Tune in for interviews, instrumentals, and more.

December 2024

Thu 19
Featured Featured Dec 19, 2024 @ 1:00 pm - 2:00 pm

FSHD University: Annual Drug Development Update

Zoom Web Conference , United States

19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Annual Drug Development Update Presented by Nicholas Johnson, MD, […]

January 2025

Thu 9
Feeling Fit with FSHD banner
Featured Featured Jan 9 @ 12:00 pm - 1:00 pm Event Series Feeling Fit with FSHD

Feeling Fit with FSHD – Chair yoga

Zoom Virtual Meeting , United States

Feeling Fit with FSHD 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 Let's start the […]

Thu 16
Featured Featured Jan 16 @ 1:00 pm - 2:00 pm Event Series FSHD University

FSHD University: The what, why and how of mindfulness

Zoom Web Conference , United States

19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Mindfulness is a practice that has been shown in […]

Mon 20
FSHD Young Adults Monthly Meeting
Featured Featured Jan 20 @ 8:00 pm - 9:00 pm Event Series Young Adults

Young Adults – Nutrition and supplements

Zoom Virtual Meeting , United States

Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Our guest this month is Mark Tarnopolsky, MD PhD, professor of […]

February 2025

Tue 4
Featured Featured Feb 4 @ 8:00 am - 5:00 pm

2025 FSHD Connect-Europe

Amsterdam, The Netherlands

FSHD Europe will organize, in collaboration with the FSHD Society, the first FSHD Connect Europe meeting on June 13th – June 15th, 2025, in Amsterdam, The Netherlands. This is a […]

May 2025

Sat 3
Ontario FSHD 360 Conference
Featured Featured May 3 @ 9:00 am - 4:00 pm Event Series 2025 FSHD 360s

Ontario FSHD 360

Burnhamthorpe Community Centre 1500 Gulleden Dr. Mississauga, ON L4X 2T7 CANADA Burnhamthorpe Community Centre 1500 Gulleden Dr, Mississauga, ON, Canada

Ontario FSHD 360 May 3 from 9:00 AM to 4:00 PM Co-hosted by FSHD Canada Foundation and FSHD Society Burnhamthorpe Community Centre 1500 Gulleden Dr. Mississauga, ON L4X 2T7 CANADA […]

June 2025

Thu 12
Featured Featured Jun 12 - Jun 13

2025 International Research Congress on FSHD

Save the date! The FSHD Society’s annual FSHD International Research Congress is the premier global conference exclusively focused on facioscapulohumeral muscular dystrophy (FSHD) research. With the recent advances in FSHD […]

July 2025

Sat 12
Featured Featured Jul 12

2025 Triple Bypass

The Triple Bypass The Triple Bypass stretches 118 miles, with 10,800 feet of elevation gain over 3 mountain passes: Juniper, Loveland, and Vail. The race will take place on July […]

August 2025

Sun 17
Featured Featured Aug 17

2025 Falmouth Road Race

Sunday, August 18, 2024 2025 Falmouth Road Race The 2025 ASICS Falmouth Road Race promises to be an exciting event celebrating 53 years of running the iconic course along the […]

September 2025

Sat 20
Featured Featured Sep 20

National Walk & Roll to Cure FSHD

The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.

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