-
HELP EARN $150,000 FOR JM RESEARCH ON GIVING TUESDAY, NOVEMBER 27
We’re competing in the annual CrowdRise Holiday Challenge. During the Holiday Challenge, charities like Cure JM compete to raise the most funds. If we raise the most money on Giving Tuesday, we will earn an additional $150,000 for crucial research and programs.
For a small rare disease organization like Cure JM, winning is crucial to helping move Cure JM’s Strategic Research Plan forward.
On Giving Tuesday, November 27th please make a gift at www.curejm.org/donate.
More information is coming soon. Questions? Contact Shannon Malloy at shannon.malloy@curejm.org
PATIENTS URGENTLY NEEDED FOR DRUG TRIALS
Help advance Juvenile Myositis research by volunteering for a drug trial.
Clinical trials are an important part of the Food and Drug Administration’s (FDA) process for bringing new medicines and treatments to patients.
Good science requires lots of data. One of the challenges of studying a rare disease is that there are fewer people to participate in trials, which means less data. Participation in clinical trials can advance understanding of rare disease and accelerate treatments.
A complete list of trials is listed here.
EVA’s SONG
"Eva was officially diagnosed shortly after she turned five. Her rash developed over the course of six months and finally, properly diagnosed by a wonderful dermatologist who happened to see a case of JDM when she was in medical school. Eva was the only other case she had ever seen.
…the side effects from the Prednisone started immediately and were unmanageable. Aside from halting her growth and giving her a bloated face (commonly known as "moon face"), Eva had terrible emotional and psychological effects, including daily panic attacks where she wouldn't want to leave the house and unpredictable "tantrums" about even the smallest things, sometimes it was just because, but they lasted for hours.
We are almost four years into this diagnosis and finally tapering Methotrexate and fully off of steroids. With this, the weekly vomiting is abating and after almost three years of not growing at all, Eva is back to being in the 70th percentile for height and she is thrilled that her legs are getting long enough to ride a horse properly. We are praying for a full, medication-free remission in the future.
When our friend wrote a song in her honor, of course our entire family was honored, but Eva was especially touched. She hopes that Rob’s song and her personal story will bring awareness to JDM and to her focus on fighting her disease with a strong spirit and determination to get to remission." Hear from the song’s composer and listen to the song he composed here. 100% of the sales made from that song will be donated directly to Cure JM.
MARK THE DATE: 2019 CURE JM NATIONAL FAMILY CONFERENCE
All family members of those affected by Juvenile Myositis (JM), including Juvenile Dermatomyositis and Juvenile Polymyositis, are invited to attend the 13th Cure JM National Family Conference.
The 2019 conference will be held at the Hyatt Lodge at McDonald’s Campus in Oak Brook, IL, approximately 20 miles west of Chicago.
LODGING INFORMATION
Join over 100 other Cure JM families and prominent JM researchers for a spirited weekend of sharing and connecting with families, physicians, and researchers. Families will also learn about the latest in Juvenile Myositis research and treatments.
Registration information is coming soon. In the meantime, contact conference@curejm.org to learn more.
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:
- Houston, TX- Saturday, February 9, 2019
- Austin-San Antonio, TX- Saturday, February 9, 2019
- Southern California - Saturday, February 23, 2019
- Central Florida - Saturday, March 2, 2019
- Northern Florida - Saturday, March 2, 2019
- Dallas-Fort Worth. TX- Mach, 2019
- Pittsburgh, PA – Saturday, April 13, 2019
- Northern California - Saturday, May 4, 2019
- Philadelphia, PA - Saturday, May 4, 2019
- Columbus, OH - May, 2019
- Washington, D.C. - May, 2019
- Minneapolis, MN - Saturday, June 1, 2019
- Chicago, IL - Sunday, June 23, 2019
- New York - Fall, 2019
- Massachusetts and New England - Fall, 2019
- Seattle, WA - Fall, 2019
Contact us at info@curejm.org for more information or to get involved.
UPCOMING EVENTS
Learn more or RSVP here.
- Christmas Shop for Cure JM
Saturday, November 3rd, Warsaw, IN
- 2nd Annual Ohio/Western Pennsylvania Chapter Family Day!
Sunday, November 4th, Columbus, OH
- Philly Chapter Family Education and Fun Day
Saturday, November 17th, Philadelphia, PA
- Giving Tuesday! This is the biggest day of the year at Cure JM!
Mark your calendars for Tuesday, November 27
- Holiday Party benefiting Cure JM and CHLA,
Sunday, December 16, Marina Del Ray, CA
- Dance-a-thon for Cure JM
Saturday, February 9, 2019, Dallas, TX
- Northern California Chapter Social and Educational Event
Saturday, February 23rd, 2019, San Jose, CA
- LivLifeStrong 5k Run/Walk for Cure JM
Saturday, March 23, 2019, Camarillo CA
- Cure JM Foundation 13th National Family Conference and Fundraiser
June 21st - 23rd, 2019, Oak Brook, IL
- 6th Annual Cowboy Brad Concert for Cure JM
Saturday, July 13, 2019, Estes Park, CO
Do you have a story you would like to share? Contact enews@curejm.org. |
