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Cure JM Foundation eNews

Our Mission: To find a cure and better treatments for JM while improving the lives of families affected by JM.

February, 2020

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Rare Disease Month

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Houston, Get Ready to Walk Strong!

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Walk Strong®

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Upcoming Events

DONATE

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Do you love someone rare?

To JM families everywhere,

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.
    • You can choose your sign and download it here.
    • Once you take the photo, please email it to .
    • 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 heart 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 heart 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
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

Super Mom at Walk Strong to Cure JM event

Come together to support children, teens, and young adults fighting Juvenile Myositis.

 REGISTER HERE 

Find a Walk Strong® event near you:

  • Houston - February 8
  • Ohio - April 25
  • Philadelphia – April 25
  • Pittsburgh - April 26
  • Chicago - May 3
  • Washington D.C. - May 9
  • Minnesota. - June 6
  • Austin / San Antonio - Spring 2020
  • Southern California - Spring 2020

Contact us at walks@curejm.org for more information or to get involved.


UPCOMING EVENTS

Woman and group of kids with Cure JM Balloons and Drawings

Learn more or RSVP here.

  • Cure JM DC Chapter Event
    February 8 in Arlington. Contact for more information.

Contact for more information and to get involved.

Do you have a story you would like to share? Contact enews@curejm.org

 

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