BENEFITING: Cure JM Foundation
EVENT DATE: Oct 08, 2016
Suzanne Edison wrote -
Dear Friends and Family,
Juvenile Mysositis is a rare, autoimmune disease where the body attacks itself. Only 2-3 in a million kids have the disease.
In the beginning Flora's muscles were very weak; she couldn't walk upstairs without using the banister, or tie her shoes, or get up off the floor without help. She fell down a lot and was tired all the time. Additionally, she had skin rashes on her eyes, elbows, knees and hands.
After she was diagnosed at age 6, she was put on a lot medicines including steroids and chemotherapy, and had to go to the hospital monthly for infusions of various medicines. That lasted for 4.75 years.
She was medicine and symptom free for 1.5 years before flaring again. The second time we knew what it was and how to treat it, so she felt better within 3 months. But it takes a long time to wean off the meds. She's been off them now for over 1.5 years and we have no idea how long this will last.
Flora doesn't think about JM much but she knows other kids who are still on a lot of meds and they are struggling to feel better. They miss a lot of school and can't do a lot of the things most kids do, especially outside in the sun.
In October of 2014 Flora walked a 10K to help Cure JM. It was hard, and she hurt a lot but was determined to finish and she did.
We’re excited to be part of Cure JM’s team for the Inaugural Walk Strong to Cure JM Seattle, a family fundraising event October 8th at Marymoor Park. Cure JM families, friends, and supporters from across the Pacific Northwest are coming together to raise $50,000 for JM research!
It's just a 1 mile walk, and there will be bouncy houses, music and food trucks. There will be prizes too for the team that raises the most money. Every donation goes straight to Cure JM, and over 91% of all funds raised go directly to research. Can we count on you to help today?
Thanks, Flora, Suzanne and John