Morgan presents “Be a Hero” to Representative Charlie Crist. |
To Our JM Family,
Last Saturday was Rare Disease Day.
Over the past month, we’ve been working to focus a bright light on the need for government to move faster in its role to help find and approve new treatments for juvenile myositis. Thanks to you, we have made great progress.
One of our most passionate young advocates, Morgan Gleason, and her mom, Amy, represented you and the Cure JM mission on Capitol Hill on Thursday. Morgan, diagnosed at 11, shared her JM story with Senators and Congress members. She shared our “Be a Hero” book with many she met, including Representative Charlie Crist and Senator Rick Scott. I want to say thank you to those that shared your stories for this book. I can tell you that your stories, and Morgan's story, brought tears to Representative Charlie Crist's eyes.
Morgan presents “Be a Hero” to Senator Rick Scott. |
We also celebrated Cure JM’s success in drug discovery with Dr. Chris Austin, who is the Director of the National Center for Advancing Translational Sciences (NCATS) at the NIH. Because of your support, the Juvenile Myositis Project at NCATS has now identified a substantial number of promising drugs as potential treatments for JM. We plan to work with NCATS and the NIH to move the most promising drugs into clinical trials at the earliest possible moment.
I want to thank you for all that you have done to advance our incredible partnership with the NIH. Because of you, Cure JM has literally become a poster child for public/private investment in rare disease drug development.
Cure JM Chief Scientific Officer Dr. Andrew Heaton with NCATS Director Dr. Chris Austin and Dr. Travis Kinder. Kinder leads the Cure JM Drug Discovery Project. |
Moreover, young advocates like Morgan are bringing JM to the attention of those very members of Congress that can help assure that the NIH receives the budget support it needs to advance JM drug discovery to the next level.
Thank you to everyone that gave, or raised money for our “I  Someone Rare” Campaign.
Please know that your gifts are very, deeply appreciated.
Thank you so much!
Jim Minow
Cure JM Executive Director
Join Rodolfo Curiel, MD, FACP, FACR, and Rebecca Sadun, MD, PhD, to learn strategies to aid in the transition from pediatric to adult care.
The goal of transition is to optimize health and assist youth in reaching their full potential. Common steps to prepare for transition include establishing a policy, tracking progress, administering transition readiness assessments, planning for adult care, transferring, and integrating into an adult practice. Preparing for the transition to adult care may begin with patients beginning to take an age-appropriate role in their care as early as the tween years.
Learn Directly from World-Class, JM Healthcare Providers!
We have so many videos where you can learn from world-class JM healthcare providers on subjects like treatments and side effects, sun protection, mental health, exercise, autoantibodies and even how to advocate for your child in your school and community.
JOIN US AT A WALK NEAR YOU
Come together to support children, teens, and young adults fighting Juvenile Myositis.
Find a Walk Strong® event near you:
- Philadelphia – April 25
- Ohio - April 25
- Pittsburgh - April 26
- Chicago - May 3
- Northern Florida - May 3
- Central Florida - May 9
- Washington D.C. - May 9
- Northern California - May 9
- Southern California - May 17
- Minnesota - June 6
- Austin / San Antonio - Spring 2020
- Dallas-Ft. Worth - Spring 2020
- Seattle/Pacific Northwest - October 4
Contact us at walks@curejm.org for more information or to get involved.
UPCOMING EVENTS
Learn more or RSVP here.
- Hoops for Hope
July 18
Baruch College, Manhattan
New York City, NY
Contact info@curejm.org for more information or to RSVP
- 2nd Annual Swing Fore a Cure Columbus
August 15
The Golf Club of Dublin
5805 Eiterman Road, Dublin, Ohio 43016
Contact info@curejm.org or visit www.curejm.org/columbus for more information or to RSVP
- Cure JM National Conference
February 12 -14, 2021
Houston, TX
Contact conference@curejm.org for more information or to RSVP
Contact info@curejm.org 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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