Lighting the Way to a Cure

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Voice of the Patient Forum Your Role in Drug Development

Webinar on the Voice of the Patient Forum

Jan 20 @ 12:00 pm - 1:00 pm
Zoom Web Conference, https://zoom.us/j/442453571, Or Telephone: 669-900-6833, Meeting ID: 442 453 571
Boston,MAUnited States

Informational Webinar Our webinar on January 20th at noon U.S. Eastern Time will introduce our Voice of the Patient Forum (taking place on April 21) and answer your questions about how to be involved. This meeting is the FSHD Community’s platform to present testimony by patients and family caregivers and educate the FDA on how FSHD has impacted your life or the life of your loved ones. Your input will result in a Voice of the Patient Report that will…

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Chicagoland 2020 Walk & Roll Committee Meeting

Feb 2 @ 12:00 pm - 3:00 pm
Mt. Prospect Public Library, 10 S. Emerson - Mount Prospect
Mount Prospect,ILUnited States
Chigagoland Walk & Roll Committee Meeting

If you're interested in helping plan our 2020 Walk & Roll to Cure FSHD, RSVP on the link below. Mt. Prospect Library, 10 South Emerson Street, Mt. Prospect, IL 60056 12:00pm-3:00pm, Meeting Room B This is our first walk committee meeting, so please come and find out about how you can help, time commitments and what's expected of the committee.    

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FSHD Connecticut Connections

Feb 6 @ 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 31, 2020

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: https://zoom.us/j/442453571 Or iPhone one-tap : +16699006833,,442453571# Or by Telephone: 669-900-6833, Meeting ID: 442 453 571 RSVP to Kathy at CTChapter@fshdsociety.org

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Colorado FSHD Chapter Meeting

South Carolina Chapter Launch

Feb 8 @ 10:00 am - 12:00 pm
Socastee Library, 141 707-Connector Road
Myrtle Beach,SC29588United States

Join our new South Carolina Chapter Director, Frank Hanley, to celebrate the launch of this new FSHD Society Chapter! We would like to get to know one another, brainstorm future Chapter activities, and get updates from the FSHD Society.  Anna Gilmore (Regional Director) will be on-hand to answer any questions you may have. For those who can’t make the drive, please login to the meeting via Zoom web conference!: https://zoom.us/j/878462854 We hope you can join us.

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North Carolina Chapter Meeting

Feb 8 @ 11:30 am - 2:30 pm
Parkway UCC, 1465 Irving Street SW - Winston-Salem
Winston-Salem,NCUnited States
Colorado FSHD Chapter Meeting

Please mark your calendars for our first Chapter Meeting of 2020! Dr. Puwanant, an FSHD specialist from Wake Forest Baptist Medical Center will be joining us to speak. Join us on Saturday, February 8th from 11:30 to 2:30 at Parkway UCC just off Silas Creek Parkway. We hope to see you there!

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Colorado Chapter Meeting

Feb 8 @ 2:00 pm - 3:30 pm
Columbine Library, 7706 W. Bowles
Littleton,CO80120United States
Colorado FSHD Chapter Meeting

Join us for our next Colorado Chapter Meeting, where we'll be learning about and discussing together a couple strategies for staying mobile and active. Scott Riddle from Creative Technology will be attending to present orthotic and other assistive mobility device options and our very own Katie Ruekert will be sharing her own journey and experience with yoga. Light refreshments will be provided.  

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San Diego Chapter Meeting

Feb 22 @ 10:00 am - 2:00 pm
Avidity Biosciences, 10975 N Torrey Pines Rd.
La Jolla,CA92037United States
Colorado FSHD Chapter Meeting

Please join us on February 22, 2020 for a tour and meeting with Avidity Biosciences. 10:00am - 2:00pm A local biotech company, Avidity Biosciences, Inc. has been diligently working on FSHD and are extremely enthusiastic to meet us and move forward with research. They would like to get to know us better; to meet the people and lives behind the disease and put a more intimate face on their research. They have invited us to make a presentation to their…

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FSHD Connecticut Connections

Mar 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 31, 2020

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: https://zoom.us/j/442453571 Or iPhone one-tap : +16699006833,,442453571# Or by Telephone: 669-900-6833, Meeting ID: 442 453 571 RSVP to Kathy at CTChapter@fshdsociety.org

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FSHD Connecticut Connections

Apr 2 @ 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 31, 2020

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: https://zoom.us/j/442453571 Or iPhone one-tap : +16699006833,,442453571# Or by Telephone: 669-900-6833, Meeting ID: 442 453 571 RSVP to Kathy at CTChapter@fshdsociety.org

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The Future is now for the patient voice

Voice of the Patient Forum for Drug Development

Apr 21 @ 10:00 am - 3:30 pm

This meeting is the FSHD Community’s forum to present testimony by patients and family caregivers and educate the FDA on how FSHD has impacted your life or the life of your loved ones. Your input will result in a Voice of the Patient Report that will be submitted to the FDA’s Division of Neurology Products, Office of New Drugs, for inclusion in the framework used to evaluate future FSHD therapies. Your views carry great weight with the agency when it considers whether…

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FSHD Connecticut Connections

May 7 @ 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 31, 2020

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: https://zoom.us/j/442453571 Or iPhone one-tap : +16699006833,,442453571# Or by Telephone: 669-900-6833, Meeting ID: 442 453 571 RSVP to Kathy at CTChapter@fshdsociety.org

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Webinar on stem cell research with Dr. Rita Perlingeiro

Jun 3 @ 12:00 pm - 1:00 pm

Dr. Rita Perlingeiro is Associate Professor of Medicine within the Lillehei Heart Institute at the University of Minnesota. Her primary research interests include understanding the molecular mechanisms controlling lineage-specific differentiation of pluripotent stem cells, and applying this information to efficiently generate tissue-specific stem/progenitor cells endowed with in vivo regenerative potential. Her work has potential applications in muscular dystrophy research and future therapies. She has received several awards and honors and has served as an expert reviewer and publisher for several…

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FSHD Connecticut Connections

Jun 4 @ 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 31, 2020

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: https://zoom.us/j/442453571 Or iPhone one-tap : +16699006833,,442453571# Or by Telephone: 669-900-6833, Meeting ID: 442 453 571 RSVP to Kathy at CTChapter@fshdsociety.org

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2020 International Research Congress

Jun 25 @ 8:00 am - Jun 26 @ 5:00 pm
Washington Hilton, Washington,DC

The FSHD Society’s annual FSHD International Research Congress is the premier global conference exclusively focused on facioscapulohumeral muscular dystrophy (FSHD) research.  World renowned clinicians, medical researchers, pharmaceutical industry leaders and basic scientists present and discuss new developments, reinforce collaborative efforts, facilitate new initiatives, and coordinate research and clinical activities.

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2020 FSHD Connect

Jun 27 @ 8:00 am - Jun 28 @ 2:00 pm
Washington Hilton, Washington,DC

The 2020 FSHD Connect. hosted by the FSHD Society, is the largest biennial educational and networking gathering of FSHD patients and families, researchers, and clinicians.

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FSHD Connecticut Connections

Jul 2 @ 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 31, 2020

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: https://zoom.us/j/442453571 Or iPhone one-tap : +16699006833,,442453571# Or by Telephone: 669-900-6833, Meeting ID: 442 453 571 RSVP to Kathy at CTChapter@fshdsociety.org

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San Diego Walk & Roll to Cure FSHD

Jul 11 @ 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: SanDiegoChapter@FSHSociety.org. We look forward to seeing you on July 11th!

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FSHD Connecticut Connections

Aug 6 @ 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 31, 2020

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: https://zoom.us/j/442453571 Or iPhone one-tap : +16699006833,,442453571# Or by Telephone: 669-900-6833, Meeting ID: 442 453 571 RSVP to Kathy at CTChapter@fshdsociety.org

Find out more »

FSHD Connecticut Connections

Sep 3 @ 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 31, 2020

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: https://zoom.us/j/442453571 Or iPhone one-tap : +16699006833,,442453571# Or by Telephone: 669-900-6833, Meeting ID: 442 453 571 RSVP to Kathy at CTChapter@fshdsociety.org

Find out more »

FSHD Connecticut Connections

Oct 1 @ 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 31, 2020

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: https://zoom.us/j/442453571 Or iPhone one-tap : +16699006833,,442453571# Or by Telephone: 669-900-6833, Meeting ID: 442 453 571 RSVP to Kathy at CTChapter@fshdsociety.org

Find out more »
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