Rare Disease Day is coming up. In fact, it’s just around the corner - February 29, 2020.
Rare Disease Day is an important and symbolic day -- a day to draw attention in Congress for the critical need to fund more research toward finding cures for thousands of rare diseases that affect millions of Americans.
I will be at the Capitol on Rare Disease Day because I want juvenile myositis to be at the front of the line.
I want our Congressional Representatives to know that for you and your family, every day is a Rare Disease Day, and that they can do something about it by assuring that the extraordinary researchers at NIH have the resources they need to get the job done.
You can help make this happen. Here’s how:
First, help us put a face on the critical need for more juvenile myositis research:
Take a photo of your warrior holding a sign of support and then share that photo with us.
We want to gather images of our warriors from around this country and create a book that we can hand deliver to Congress. Having your warrior's image along with those from hundreds of other JM families will have a huge impact when Cure JM is on Capitol Hill on February 29.
Second, please consider a gift to Cure JM’s I Someone Rare campaign:.DONATE HERE.
Your donation is critical because Cure JM has funded a number JM-specific research programs at NIH which have allowed us to engage some of the best and brightest researchers in the world to find better treatments for our children. We have been able to leverage the resources of the most advanced labs on the planet to help us discover or utilize newer drugs to better manage JM, drugs that are in clinical trials right now at NIH or with NIH partners.
This drug discovery and the current clinical trials have been made possible because of Cure JM's grant support to the labs and institutions who are leading the charge on behalf of our children. I can tell you, these dedicated researchers Someone Rare, too.
Thank you for your consideration. I’m honored to be your representative on Capitol Hill, and appreciate your lending your name to the cause.
With appreciation,
Jim Minow
Cure JM Executive Director
HOUSTON, GET READY TO WALK STRONG!
The below video was made possible by Melissa and Tim Shelby and features some wonderful Cure JM families in Texas, like the Greater Houston and Southeast Texas chapter Presidents, Bud and Ryane Sheffield.
Tim is a Director of Cure JM's Board of Directors and both he and his wife Melissa are actively involved in the Houston Chapter of Cure JM. They served as Co-Chairs of the first Walk Strong for Cure JM® Houston, which raised over $60,000 for Cure JM. Their son, Grant, was first diagnosed with JM in 2011. They made this video in hopes that people who watch it will understand JM and will feel inspired to support Cure JM Foundation.
The second annual Houston walk is on February 8th. You can register, or support the Houston walk here.
Special thanks to Jordan Rhodes, who donated his time to film and edit this video.
JOIN US AT A WALK NEAR YOU
Come together to support children, teens, and young adults fighting Juvenile Myositis.
Someone Rare campaign:.
