Nikki Hahn wrote -
Dear friends and family,
My 8 year old daughter, Addie, was diagnosed with Juvenile Dermatomyositis, a rare debilitating disease nearly four years ago. There is no cure....just treatments that often lead to other difficult medical conditions. In fact, as I write this, Addie and I are at Columbia Children's Hospital for her bi-weekly infusion. We arrived around 8am this morning and won't be discharged until this evening. She'll spend the 10-12 hours sitting in a reclined chair hooked up to machines. I'll spend the day watching her...wishing this horrible disease would go away.
We've been at this treatment for 46 months....multiple needle sticks, blown veins, low dose chemotherapy, thinning hair, high dose steroids, weight gain, multiple school absences, and chronic joint and muscle pain. But, perhaps the hardest part for Addie is having to explain over and over again why when it is 90+ degrees she is wearing long sleeves and long pants. You see, JM is triggered by sun exposure and viruses. So, staying out of the sun is a must for her.
Since JM is considered an orphan disease, it isn't high on the list of research funding. In fact, Cure JM Foundation is the only organization commiteed to funding JM research. There is no cure....YET! With your generous support, we can fund the much needed research that, we believe, will one day lead to a cure. Please help us fund this research! Addie's future depends on it!
Drew and I hope you will consider joining our team on Sunday, October 14th at Quaker Ridge School to Walk Strong for Cure JM. The day promises to be fun for the entire family! Team Addie t-shirts will be provided to everyone who donates and/or raises over $100. Go Team Addie!
With love and appreciation,
Nikki & Drew
JOIN US OCTOBER 14, 2018 FOR OUR 2ND ANNUAL WALK
Date: Sunday, October 14th
Event: 10:00am - Noon
Registration opens at 9:00am
Location: Quaker Ridge Elementary School -- 125 Weaver St, Scarsdale, NY 10583
This event is free and open to the public.
All proceeds benefit Cure JM Foundation, a non-profit dedicated to finding a cure for Juvenile Myositis, a life-threatening disease which causes the body’s own immune system to attack healthy cells and tissues. It can affect virtually any system of the body, the heart, lungs, skin, muscles, and more. And there is no cure....YET!
But with support from friends and family like you, we’re getting closer to better treatments and a cure.
Your support now will keep that momentum going.