By Patrick McCartney,
IETF Executive Director
One of the pillars of the International Essential Tremor Foundation’s mission statement is “to provide hope to the essential tremor (ET) community worldwide through awareness.”
As we all know one of the biggest challenges we face is raising awareness for ET. This is a daily task for our staff. We use a variety of channels including social media, printed materials, and talking with patients, caregivers, and family members every day on the phone who have questions about this disorder.
Another way we try to raise awareness is by attending national conferences and sharing a variety of information on ET. October 10 through 12 I attended the American Academy of Family Physicians Family Medical Experience in New Orleans, LA. There were more than 5,000 family doctors attending the event. This is the third year we have attended and it’s a great opportunity to share with family doctors the resources the IETF has available for them and their patients.
I shared our Patient Handbook, IETF brochure, ET vs. Parkinson’s fact sheet, medical alert cards, IETF pens, and Tremor Talk magazines with them. The ET vs. Parkinson’s fact sheets were so popular I ran out the second day and had to make more copies at the hotel for the last day of the show.
A couple of takeaways from this conference:
- Every doctor I talked with had treated ET patients, but not one of them was aware of the IETF.
- Several of the doctors I talked with have ET or have family members or friends who have it and were excited to see the resources we have to share.
- Everyone I spoke with said they would share our information and/or direct their patients, friends, or family members with ET to the IETF either through our website or our toll-free phone number.
I would encourage you, as I encouraged these doctors, to be advocates for ET and the IETF in your community. There are a lot of stereotypes and stigmas associated with ET. Don’t let them prevent you from sharing your story and explaining the daily challenges you face because of ET. And let others with ET know they are not alone. There are IETF support groups all around the country. You can find a listing of them on our website. If there is not one in your area consider starting one or join our online support group on Facebook (Essential Tremor Awareness Group).
We appreciate your support and if you have any questions please don’t hesitate to contact the IETF at 1-888-387-3667 or firstname.lastname@example.org.