Resources for Volunteer Leaders
Welcome! This resource page gives you access to the tools you need to SPARK 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 - email@example.com
Ashley Ferreira - Regional Director, Western Chapters - firstname.lastname@example.org
Heidi Roy - Regional Director, Eastern Chapters - email@example.com
Kim Shanley - Manager of Events & Community Engagement - firstname.lastname@example.org
Anna Gilmore - Director of Patient Engagement (Gathering Place Liaison) - email@example.com
June Kinoshita - Sr. Director of Research & Patient Engagement (Gathering Place Liaison) - firstname.lastname@example.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!
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.
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:
- You can email all Walk & Roll Leaders here:
- Join the Volunteer Leaders Facebook Group:
Access the FINAL Slide Deck: 2023 VLS_MasterSlideDeckFINAL
The Therapeutic Accelerator is an FSHD Society initiative aimed at overcoming obstacles and shortening the timeline to get approved therapies (drugs) and a cure to FSHD families. For years this has largely been done through basic science, industry collaborations, and federal advocacy. We are now at a critical phase where patient engagement is vital.
As Volunteer Leaders, one of the most important things you can do right now is make sure we have current and complete contact information on the people in your chapter. When you hold meetings, or just chat with people, ask them to go to our website and add or update their information, especially their relationship to FSHD.
- This is going to help us more directly target the right people, for the right communications, and the right studies moving forward.
- It will put them first in the queue to be informed when we launch our BetterLife patient platform, or when more clinical trials launch and begin recruiting.
- It let’s us know who you are and how you want to be involved.
Everyone impacted by FSHD is critical to the process and to making sure we all reach our collective goal of the first-ever approved therapy by 2025! We need all patients & families to activate – no matter where they are in their FSHD journey.