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.
Want to reach out to all of the Chapter Leaders at once, to share ideas, ask for input, or get feedback on a challenge you are facing?
Coordinating local activities in support of national efforts, and the FSHD Society’s mission, the volunteer Chapter Director, working along with other local volunteers, is responsible for planning, implementation, close out, and evaluation of the annual chapter programs in his/her community.
The goals of the chapter program are:
- Patient Empowerment through education
- Patient Connectivity through building a supportive community
- Resource Development through fundraising activity
- Building awareness and affinity among those impacted by FSHD
- Increasing public awareness of FSHD
We look forward to a successful and thriving chapter in your community. It would not be possible without your tremendous gift of time and talent!
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 chapter leader use the postcard? Download the PDF and get copies printed (or ask your regional director to help you get some in hand). When you have chapter gatherings, take them and invite members to drop them off at their clinician's office.
Want t o 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