Cure JM Foundation Newsletter
Cure JM is excited to announce our first-ever regional chapters. Chapters are being launched in the Pacific Northwest, New York, Texas, Metro-Chicago, and Metro-D.C./Virginia.
Photo from the recent chapter planning meeting for Cure JM's Metro-D.C./Virginia Chapter.
As you may know, Cure JM recently announced plans to launch its first five regional Cure JM Chapters.
"We are so excited to launch Cure JM's first-ever chapters," says Cure JM President Mitali Dave. "Regional Chapters are an important way for Cure JM families to connect with each other, learn about JM and JM research, and interact with the JM medical community."
All Cure JM families and extended families are invited to these upcoming Cure JM Chapter Organizing Meetings:
- Cure JM's Pacific Northwest Chapter: Sunday, May 15, 3PM, Woodinville, WA (outside Seattle). Contact jana.sall@curejm.org to RSVP or learn more.
- Cure JM's New York Chapter: Monday, June 6, 7PM, New York, NY. Contact nikki.hahn@curejm.org to RSVP or learn more.
- Cure JM's Texas Chapter: Saturday, July 23, Noon, Martindale, TX (between Austin and San Antonio). Contact sissy.taylor@curejm.org to RSVP or learn more.
Please join us at one of these Chapter Organizing Meetings for an update on the latest developments in Juvenile Myositis research, a Q & A, presented by Cure JM Executive Director Jim Minow, updates from local JM researchers and physicians, and an update on Cure JM's regional-chapter initiative.
Please also forward this invitation to any extended family near Seattle, New York, or Texas, so they can also join the events.
More events will also be scheduled soon for two additional Cure JM Chapters:
- For more information about Cure JM's Metro-Chicago Chapter contact denise.koch@curejm.org.
- For more information about Cure JM's Metro-D.C/Virginia Chapter contact michelle.best@curejm.org.
Please contact the Cure JM Chapter Leaders mentioned above or info@curejm.org with any questions.
Cure JM has been a top-rated nonprofit since 2011.
Cure JM Foundation has been honored with a prestigious 2016 Top-Rated Award by GreatNonprofits, the leading provider of user reviews about nonprofit organizations.
Says Great Nonprofits staff, "We are especially thrilled to recognize the great work of your organization, given that less than 1% of eligible nonprofits have received this distinction." Being on the Top-Rated list gives donors and volunteers confidence that Cure JM is a credible organization.
Cure JM made the Top-Rated list because of many positive reviews about our work from donors and partners. Says one recent reviewer: "Cure JM has been a lifesaver for our family... Cure JM is an amazing group of family and friends working together for one goal, one dream -- a cure for juvenile Myositis" Read more reviews here.
"Cure JM is very proud to be named a Top-Rated Nonprofit for the sixth year in a row," says Shari Hume, Vice President and Co-Founder of Cure JM. "This award is the most meaningful one for Cure JM because it comes from you…our volunteers, patients, families, and donors. Thank you for this great honor! We will continue to do everything we can to support the families affected by JM, and we will never give up until we find a cure."
Cure JM Kid, six-year-old Eva, has been named the Year-End Show Champion at the English/Western Schooling Show at Dickson Ranch in Woodacre, CA.
Congratulations, Eva!
Six-year-old Cure JM Kid Eva was recently named the Year-End Show Champion at a recent English/Western Schooling Show at Dickson Ranch in Woodacre, CA.
This was Eva's fourth show of her season. She won 3 first place ribbons along with 2 champion ribbons which were awarded to the highest scorer for the year.
Eva was diagnosed with JDM (Juvenile Dermatomyositis) in 2015, but that hasn't stopped her from pursuing her dreams to compete in horse shows and be a normal kid.
"We are so proud of Eva," says her mom Shannon. "She has never for a minute stopped believing she can do anything. Her priority is to stay active to beat her JDM and she rides daily."
Through Cure JM, Eva and her family have been connected to other families also battling JDM. Connecting with so many other families who were coping with this disease helped get them through the awful months after Eva's diagnosis.
"When Eva was first diagnosed, we were so scared and didn't know anything about this disease," says Shannon. "We are so grateful to Cure JM for introducing us to other parents who helped us get our family back on track."
Eva's family is now giving back by supporting other families and is in the planning stages for a fundraiser to benefit Cure JM and JM research. "Although it has been a tough year, we are all stronger than ever," says Shannon.
Cure JM 10th National Conference and Fundraising Event will be in Austin, TX, February 17-19, 2017.
Cure JM's 10th National Conference and Fundraising Event will be in Austin, TX February 17-19, 2017
Join over 100 other Cure JM families and prominent JM researchers for a spirited weekend of sharing, learning and connecting.
Anyone affected by Juvenile Myositis (JM), including Juvenile Dermatomyositis and Juvenile Polymyositis, is invited to attend.
The conference will include:
• Intimate Break-out Sessions about coping with real life issues facing JM patients, families, and caregivers
• An Educational Forum and interactive sessions with Juvenile Myositis Researchers and Physicians
•Kids' Fun Camp where the kids will have fun while caregivers attend the educational sessions
• NEW! More fun activities for teens and young adults to enjoy while connecting with each other
• NEW! Walk Strong to Cure JM family fun walk
• The Austin Marathon and Half Marathon, where Cure JM runners and walkers will help raise funds for JM research
Plus more NEW sessions that YOU requested!
More information and registration are coming soon.
The physician education program is being funded by Cure JM. The project is being led by Megan Curran, M.D. with support from Cure JM Foundation.
Dr. Curran is an Attending Physician, Division of Rheumatology, Ann & Robert H. Lurie Children's Hospital of Chicago; an Assistant Professor, Northwestern University Feinberg School of Medicine; and a Program Director, Northwestern/McGaw Pediatric Rheumatology Fellowship Program.
Thank you to the over 400 Cure JM families who provided input into Cure JM's Physician Education Project.
The information provided by Cure JM families will be used, along with physician input, to educate physicians across North America. The goal is to help physicians diagnose JM faster so that the patients can begin treatment without delay. Research shows that early treatment can lead to better outcomes.
Of the families who responded to this emailed survey from Cure JM, here are some results:
- 33% of patients saw 2-3 doctors prior to diagnosis or referral
- 78% of patients who responded are not in remission
- 46% of patients were misdiagnosed with eczema
- 32% of patients were initially told “nothing was wrong”
- The most debilitating symptoms cited most frequently were muscle weakness and pain
To help advance this cause, photos of your child's symptoms are needed urgently.
If you would like to help, please send photos of the following symptoms to research@curejm.org:
- Calcinosis Gottron's Papules
- Picture that demonstrates muscle weakness
- Rash on knees, fingers, or elbows
- Lipodystrophy
- Picture that demonstrates fatigue/tiredness
- Facial rash
Consent forms will be provided for your signature so that you understand how the photos will be used. More updates on this important project will be coming soon.
Thank you for your participation and please email research@curejm.org if you have any questions.
Cure JM Pacific Northwest Chapter: Walk Strong to Cure JM Kickoff Party
Sunday, May 15, 2016
Woodinville, WA
Cure JM Chicago Chapter Family Picnic
Sunday, May 15, 2016
Bloomingdale, IL
2nd Annual Gracey Fest
Sunday, May 22, 2016
Mount Washington, KY
Cure JM Metro New York Chapter Planning Meeting
Monday, June 6, 2016
New York, KY
3rd Annual Cowboy Brad Concert for Cure JM
Saturday, June 25, 2016
Estes Park, CO
Mud Run with Team Cure JM
Saturday, July 9, 2016
Killington, VT
4th Annual Texas "Mini Conference"
Saturday, July 23, 2016
Martindale, TX
2nd Annual Evening Under the Stars
Saturday, August 6, 2016
Warsaw, IN
Annual Garage Sale to Benefit Cure JM
Friday-Sunday, September 9-11, 2016
Lake Stevens, WA
Inaugural Walk Strong to Cure JM
Saturday, October 8, 2016
Redmond, WA
Basket Raffle to benefit Cure JM
Sunday, October 16, 2016
Ticonderoga, NY
5th Annual Holiday Shop for a Cure
Saturday, November 5, 2016
Warsaw, IN
Melinda's Wish benefiting Cure JM
Sunday, April 23, 2017
Chicago, IL
Cure JM Foundation® is a 501(c)(3) nonprofit organization dedicated to finding a cure for Juvenile Dermatomyositis (JDM) and Juvenile Polymyositis (JPM).
These rare and life-threatening autoimmune diseases are collectively known as Juvenile Myositis (JM). Approximately 2 to 4 children in a million in the United States are diagnosed with JM each year.
Support Cure JM when you shop online with 
Newsletters
