Welcome to the South Carolina Chapter!
Thank you for visiting the South Carolina Chapter of the FSHD Society which officially launched in October 2019. We are here to build a local community of patients, family and friends, and help them connect and advocate for themselves and each other. Our hope for the future is to find a cure – Until then, we hope to bring a greater awareness to the community, and to help improve the quality of life of all those affected.
To contact us directly, please email: SouthCarolinaChapter@fshdsociety.org.
Please join us! Simply fill out the form in the sidebar to become a member of the South Carolina chapter.
Upcoming Events
Jan
20
Webinar on the Voice of the Patient Forum
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…
Find out more »Feb
8
South Carolina Chapter Launch
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.
Find out more »Apr
21
Voice of the Patient Forum for Drug Development
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…
Find out more »
Frank Hanley
Chapter Director
Frank Hanley and wife Donna recently relocated to Myrtle Beach from Maryland. Frank was active with the Greater Philadelphia Chapter, and offered to start-up the South Carolina Chapter when he found that a local group did not exist. He feels strongly about the need to share treatment information, personal experiences, support and encouragement.
Frank suffers with FSHD and has been struggling with the disease all of his adult life. He practices martial arts as his way of fighting back. He is positive about the research being done in search of the cure.
Frank holds a Master’s Degree in Project Management. He and Donna have four children (two boys and two girls), and a grandson.
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