Volunteer Resources | FSHD Society

Resources for Volunteer Leaders

Volunteer leaders help folks with FSHD live a better life.(3)

Welcome! This resource page gives you access to the tools you need to foster Engagement, Connection, Community, and Action! You’ll find essential information such as updates from the FSHD Society, ready access to forms and documents, upcoming training opportunities, access to past trainings and materials, marketing materials and more!

Hopefully, everything you need can be found here, but if something is missing please email a member of the Community Engagement team and we will make every effort to get the information up and available to everyone.

Beth Johnston - Chief Community Engagement Officer - beth.johnston@fshdsociety.org

Ashley Ferreira - Regional Director, Western Chapters - ashley.ferreira@fshdsociety.org

Jenny Gast - Regional Director, Eastern Chapters - jenny.gast@fshdsociety.org

Kim Shanley - Manager of Events & Community Engagement - kim.shanley@fshdsociety.org

Lauren Kopchik – Community Engagement Coordinator - lauren.kopchik@fshdsociety.org

Anna Gilmore - Director of Patient Engagement (Gathering Place Liaison) - anna.gilmore@fshdsociety.org

June Kinoshita - Sr. Director of Research & Patient Engagement (Gathering Place Liaison) - june.kinoshita@fshdsociety.org

Be IN THE KNOW!

When you have an audience, at a chapter gathering, at the beginning of a Gathering Place meeting, during a small group conversation, and all points in between, be armed with some intentional and consistent information to share!

Monthly Hot Sheets

Want to reach out to all of the Chapter Leaders or all of the Walk & Roll Leaders at once, to share ideas, ask for input, or get feedback on a challenge you are facing?

Make the most of our new Microsoft Team for Volunteer Leaders. Access the Team HERE
From the Team, you can chat with others, share files, access the training calendar, host video meetings, and more. Having trouble getting going? Work with your regional director!
You can email all Chapter Leaders here:
fsh-society-chapter-directors@googlegroups.com
You can email all Walk & Roll Leaders here:
fsh-society-walk-roll-leaders@googlegroups.com
Join the Volunteer Leaders Facebook Group:
https://www.facebook.com/groups/2184658054918993

2025 Volunteer Leadership Summit

As a valued FSHD Society Volunteer Leader, YOU ARE INVITED to our ⭐️ 7^th ANNUAL VOLUNTEER LEADERSHIP SUMMIT ⭐️

Whether this will be your first time joining us, or your 7^th, we can’t wait to host you as we once again bring our Volunteer Leaders together for learning, camaraderie, brainstorming, and some fun! 🥳

This next year is a pivotal one for FSHD – so let’s kick-it off right!

🗓️ When: Jan 31-Feb 2, 2025

🏨 Where: The Hilton Chicago O’Hare, Chicago, IL.
^The hotel is connected to O’Hare airport (ORD), so there is no need for ground transportation.

Please CLICK HERE to register. Check out the “About the Event” section of the registration page for information on accommodations, meals, and other details.

REGISTRATION DEADLINE: JANUARY 10, 2025, but please register early if possible.

While we’d love to see you in-person, a virtual option is available.

Volunteer Training Resources

As part of our effort to provide you all the tools, insights, and tips you need to make your work with the FSHD Society more fulfilling and effective, we have provided various training opportunities. Catch up on all you may have missed or re-watch your favorites!

Leadership Volunteers Training Series

Volunteers on the Silver Screen!

Amy Bekier, San Diego Chapter and Walk & Roll Leader, and member of the Board of Directors, is the subject of this award-winning short-form documentary, The Reinventor.

Claire Szabo-Cassella, a member of the Arizona Chapter and a leading Walk & Roll team, produced her own short documentary about her life. Check it out: https://filmfreeway.com/RedScooterDiaries