advocacy ePatient fibromuscular dysplasia FMD rare disease social media #hcsm Medicine X writing storytelling death medicine 2.0 mindfulness relationships stroke technology Mayo Clinic caregiver dying family life mental health patient care publishing advance directive anxiety bucket list depression Buddhism alternative medicine cancer humor rheumatoid arthritis women Buddha health literacy marketing marriage
28 May 2012
FMD Awareness Day - July 23, 2012
Participating in the event is as involved as you want to make it!
1) Wear a necklace or bracelet of red beads. Be sure to explain to others why you are wearing the beads. Use social media (Facebook, Twitter, etc) to share a photo of you wearing your red bead necklace or bracelet and share your story about why you are wearing it. Encourage others to participate! (Why red beads? The primary form of FMD — the medial form — is said to look like a "string of beads" upon angiogram. Red is the color of blood.)
2) Donate your lunch money to rare disease research. Instead of going out for lunch, pack a lunch! Contribute the $5-$15 you would have spent on lunch to the CoRDS Registry at Sanford Health. Simply mail a check to Sanford Health Foundation, 1305 W. 18th Street, Sioux Falls, SD 57117 with Rare Disease Registry on the check's memo line. Encourage others to participate! Make lunch a communal event—eat lunch with a group of friends or co-workers and make sure to share stories of how FMD has impacted participants' lives. Take a photo of your lunch and share it via social media.
3) Contact your local media or hospital public relations team and ask for an opportunity to share your FMD story. Be sure to emphasize the angle of what it means to live with FMD - as a patient, spouse, caregiver, etc. FMD Chat's Readings & Resources page at fmdchat.org links to several helpful articles to explain FMD from a medical standpoint.
4) Enter to win a one-of-a-kind red beaded necklace, specially made for FMD Awareness Day! Donate $2 to FMD Chat by June 30, 2012. Each $2 donation represents a chance to win. All donations can be used to cover printing and postage costs for FMD Chat materials, which are sent to healthcare providers and patients. Visit fmdchat.org to enter.
FMD Awareness Day is solely the creation of FMD Chat. For more information, visit fmdchat.org, facebook.com/fmdchat, or twitter.com/fmdchat.
(Special thanks to "Me, Myself & Irene" for her creative and inspiring ideas to raise FMD awareness.)