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.
Gathering Place Leaders, of you want to reach out to all of the Chapter or Walk & Roll Volunteer Leaders at once, to share ideas, ask for input, or get feedback on a challenge you are facing?
- You can email all Chapter Leaders here:
fsh-society-chapter-directors@googlegroups.com - Join the Volunteer Leaders Facebook Group:
https://www.facebook.com/groups/2184658054918993
Managing Your Group
As a Gathering Place leader, your role is to facilitate well-run Peer Support Group meetings. The basic starting point is to remind all that these are safe spaces where everyone can share their concerns confidentially. Speak respectfully, listen respectfully.
To coordinate monthly meeting topics and speakers, please refer to this Gathering Places Scheduler Google Sheet. You can see what has been confirmed for your group and for others, and what remains to be done. To give our communications team plenty of lead time to update the events calendar and promote upcoming meetings, please confirm TWO MONTHS IN ADVANCE any special topics/speakers at our Gathering Place moderators' monthly meeting (last Mondays at 8:00 pm. For example, at the January meeting, confirm March topics.
The Gathering Place Scheduler includes an Idea Bank tab with a large list of possible topics and guest speakers. No need to re-invent the wheel!
Finding patients - Helping patients find us!
One way we can help our patient community is to help healthcare professionals know more about FSHD. That is why the FSHD Society created a Continuing Medical Education Masterclass for FSHD. It is available for healthcare providers on-demand and will cost them just $50.
We also want to encourage doctors to use the ICD-10 code for FSH muscular dystrophy patients—not just for the newly diagnosed, but retroactively. A search of 100 million U.S. individuals found only 600 FSHD patients with the ICD-10 code (only about 5% of the expected number.) Use of the code can help make sure medical data are available to improve patients’ quality of care.
How does a Gathering Place Leader use the postcard? Tell your group about the code and drop a link to the PDF in the chat. (Link via the button on the right!) Encourage them all to get the code on their health record!
Want to go the extra mile? Get a stack of postcards and drop them off at area doctor offices. Want to know who in your area treats FSHD? Get a list here: https://www.medifind.com