Lighting the Way to a Cure

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New York City Family Day Conference

Nov 16 @ 10:00 am - 3:30 pm
New York Athletic Club, 180 Central Park South - New York
New York,NYUnited States

New York Athletic Club Presidents Room 180 Central Park South New York, NY 10019 Advance registration required. Please click the button below. Deadline November 11, 2019. REGISTER Download the Meeting Flyer Download the 2019 NYC FSHD Family Day Agenda Join us for our first-ever New York City FSHD Family Day Conference to meet top researchers, clinicians, fellow patients, and family members. You’ll hear about ongoing clinical trials and connect with the outstanding team at Columbia University Medical Center. Speakers include Michio Hirano,…

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Mid-Atlantic Chapter Meeting

Nov 16 @ 10:00 am - 1:00 pm
Kennedy Krieger Institute, 801 North Broadway, Rm 202

Meeting Agenda: - Bagels and Brainstorming - Please bring your ideas for future events! - Adapting Your Home for Accessibility - Karen Pitsley, AIA, Transforming Architecture LLC - Update on Fulcrum Therapeutics Clinical Trial - Doris G. Leung, MD, PhD, Frank Kolakowski, FSHD Society Board Member We hope to see you there! ~ Ann Kolakowski, Interim Chapter Director. Questions: Contact Ann: Please RSVP by November 14th:

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2019 FSH Fundraiser in Honor of Zachary

Nov 16 @ 1:00 pm - 5:00 pm
Greenville Shrine Club, 119 Beverly Road - Greenville
Greenville,SCUnited States

Please join us for a spectacular fundraising event in honor of Zachary Phillips! We are raising funds for treatments and a CURE for FSH Muscular Dystrophy. Live auction, car show, raffles, door prizes, music, food & more!!! $10 Wristband fee (covers food plate) Motorcycles: Meet at noon at “House Divided”: 1659 Woodruff Road, Greenville, SC 29607. Stands up at 1pm. Car show entries: Meet at noon at the Greenville Shrine Club: 119 Beverly Road, Greenville, SC 29609. Full event flyer…

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FSHD Society radio welcomes singer songwriters Levi Benson and Jenny Hasenjaeger

FSHD Radio welcomes Levi Benson and Jenny Hasenjaeger

Nov 20 @ 8:00 pm - 9:00 pm
Facebook Live, United States

Jenny Hasenjaeger Levi Benson FSHD Society radio welcomes singer songwriters Levi Benson and Jenny Hasenjaeger this month. They share an FSHD diagnosis and a love of music. Levi Benson was featured earlier this year in FSHD Advocate and on our blog. Since the time he performed his first childhood song, “I Love My Lips,” made famous by VeggieTales’ Larry the Cucumber, Levi Benson’s lips have been crooning tunes. Those on the listening end of the Kansas musician's performances have been…

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Western Washington FSHD Community Group Meeting

Nov 23 @ 10:00 am - 11:30 pm
|Recurring Event (See all)

An event every month that begins at 10:00 am on day Fourth of the month, repeating indefinitely

Sant Photography – Seattle Summer Trip Hike Vacation Washington – Brad Sant Portrait Landscape Scenic Photographer

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: Or by Phone:  669 900 6833, Meeting ID: 154 396 011 Questions? Please contact:  We look forward to “seeing” you there!

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FSHD Connecticut Connections

Dec 5 @ 7:00 pm - 8:30 pm
|Recurring Event (See all)

An event every month that begins at 7:00 pm on day First of the month, repeating until Dec 5, 2019

Zoom web conference, United States

Kathy Senecal and Sarah Pashe invite you to come support, empower, share and network with the FSHD community. This is a monthly meeting that will take place on the first Thursday of each month via Zoom web conference. Patients, caregivers and family members welcome! Join from your computer or tablet: Or iPhone one-tap : +16699006833,,442453571# Or by Telephone: 669-900-6833, Meeting ID: 442 453 571 RSVP to Kathy at

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Daytona Beach Chapter Meeting

Dec 7 @ 1:00 pm - 3:00 pm
Christ Community Church, 329 N Williamson Blvd
Daytona Beach,FL32114United States

We are excited to be holding our first member meeting as a new chapter! This is a friendly, confidential meeting where you can share and learn from one another about local resources, tips and tricks for coping with the physical and psychological challenges, and offer and receive support. There will be finger foods served. There is a nearby restaurant where we will continue socializing after the meeting, so feel free to bring your friends! “We hope to see you there!” – Justen & Michelle Ellis, Daytona…

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Western Pennsylvania Chapter Meeting

Dec 7 @ 1:30 pm - 3:00 pm
Whitehall Borough Building, 100 Borough Park Dr.
Pittsburgh,PA15236United States

Mindfulness Workshop with Jennifer Egert, Ph.D. We welcome you to join us for a remote Mindfulness Workshop with Jennifer Egert, Ph.D., a clinical psychologist in private practice in New York City, followed by a peer support session sharing personal experiences. Learn more about Jennifer here! We hope to see you there! ~ Mark Christman, Western PA Chapter Director. We strongly encourage everyone to physically join us for this meeting, but if that is not an option for you, we…

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Webinar: The ABC’s of clinical trials with Dr. Rabi Tawil

Dec 7 @ 2:00 pm - 3:00 pm
Zoom web conference, United States

This year, Acceleron’s ACE-083 drug is expected to complete its phase 2b trial, and Fulcrum is conducting its trial of Dr. Rabi Tawil the first drug intended to repress DUX4, the gene implicated in causing FSHD. This is a good time to brush up on the vocabulary of clinical trials and the FDA approval process, and learn how to navigate the path to volunteering for trials. Your guide is Rabi Tawil, MD, who is principal investigator for several clinical trials…

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Bay Area Chapter Holiday Meeting

Dec 8 @ 1:00 pm - 3:00 pm
Stanford Hospital, Hoover Pavilion, 211 Quarry Road, 2nd floor, Room 208 - Palo Alto
Palo Alto,CAUnited States

Please join us for our annual Holiday Chapter Meeting at the Stanford University Medical Center at the Hoover Building, Room 208 on the second floor. We welcome all FSHD patients and family members to attend this meeting! “We hope to see you there!” ~Sue & Kent Drescher, Bay Area Chapter Directors

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FSHD Society radio welcomes singer songwriters Levi Benson and Jenny Hasenjaeger

FSHD Radio – December show

Dec 18 @ 9:00 pm - 10:00 pm
Facebook Live, United States

Join radio host Tim Hollenback via Facebook Live on Wednesday, December 18, at 9:00 PM EST  - topic TBD

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Columbus Chapter Meeting

Jan 12, 2020 @ 1:00 pm - 3:00 pm
Columbus Metropolitan Library-Dublin Branch, 75 N High St
Dublin,OH43017United States

You won’t want to miss our next Chapter meeting as there is so much to share! It’s an exciting time in the world of FSHD. Join us on Sunday, January 12th from 1-3 pm at the Columbus Metropolitan Library-Dublin Branch. Please note: We will be in Meeting Room 2! Keep an eye on this page for further updates as the date draws closer! ~ Susan Aumiller, Chapter Director.

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San Diego Walk & Roll to Cure FSHD

Jul 11, 2020 @ 8:00 am - 12:00 pm
Harbor Island Park, 1875 Harbor Island Dr. - San Diego
San Diego,CAUnited States

Please mark your calendars: The 2020 San Diego Walk & Roll to Cure FSHD has been scheduled! We hope to see you on Saturday, July 11th, 2020 at Harbor Island Park! Please reach out to the Chapter Director, Amy Bekier, with any questions! She can be found at: We look forward to seeing you on July 11th!

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