Cure JM Foundation Newsletter

April 2015

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Thank you, Cure JM Volunteers!

Cure JM volunteer Mielle hands out water bottles

Cure JM volunteer Mielle hands out water at the 2012 Cure JM Conference in Baltimore, MD.

It’s National Volunteer Week! And you have a lot to be proud of.

Because Juvenile Dermatomyositis(JDM) and Juvenile Polymyositis(JPM) are rare diseases, Cure JM relies on parents, grandparents, friends, and family members to get involved.

Last year, over 200 Cure JM volunteers stepped forward to raise funds for research, spread awareness, and support other families.

Check out Cure JM's highlights to see how volunteers are making an impact. Without volunteers like you, these accomplishments would not be possible.

We so appreciate you taking time out of your busy lives. Thank you!

One Volunteer’s Labor of Love

Cure JM Kid with Quilt

Sue is currently working on quilt #122 for Cure JM families. Sue has volunteered nearly 4,000 hours to quilting for Cure JM kids.

Sue Carpenter has volunteered her time and talent for nearly 4 years, making 121 quilts for Cure JM families.

Sue began this special project in 2011 when she decided she wanted to do something for kids battling Juvenile Myositis (JM).

“I wanted to help lift their spirits,” says Sue. “These kids deserve some extra smiles and comfort.”

Sue’s first two quilts went to Mason and Gary. When she saw the smiles on their faces after they received their quilts she knew she needed to keep making quilts and reach as many JM kids as she could.

Since then Sue has made 121 quilts, sending them to Cure JM families all over the world. 100 quilts have gone to children or teens battling JM and 21 quilts have been used to raise funds for JM research.

Each quilt is personally made with the particular child or teen in mind and no two quilts are the same. The quilts are all sent as a surprise for both the child and the parents.

Says Sue, “I will keep making quilts as long as my wrist allows and as long as there are Cure JM kids out there.”

Thank you, Sue!

Sue is the mother to twin girls. She is also a Cure JM Family Support Network Representative and a member of the Cure JM Advisory Council.

Want to Help? You’re In!

Volunteers Madelyn and her little sister Gracyn

Madelyn and her little sister Gracyn volunteered at a Golf Event to raise money for Cure JM Foundation and Juvenile Myositis research. Thank you, Madelyn and Gracyn!!

You care about advancing JM research and helping families fight JM -- and now is the perfect time to make a difference.

Got 5 minutes? Email, tweet or post to social media about your child's JM journey; ask your friends to share your story and donate at curejm.org. We will let you know when a donation is made in your honor.

Got 10 minutes? Check out www.curejm.org/florida and start planning your trip to attend the national conference in January 2016.

Got 15 minutes? Help raise funds for research -- check out some fun and easy ideas here. To get started, email info@curejm.org or call (760) 487-1079.

Got 30 minutes? Volunteer to help with:

family support
teen / young adult outreach
marketing and communications
national conference planning
physician education
research

Because kids can't fight Juvenile Myositis alone!

Cure JM's National Conference will be January 15-17 in St. Petersburg, Florida

National Fundraiser 2014

Join over 80 Cure JM families, as well as prominent JM researchers, at the 9th Cure JM National Conference, January 15-17, 2016 in St. Petersburg, Florida.

The Cure JM National Conference will be January 15-17 in St. Petersburg, Florida.

Join over 80 other Cure JM families for a spirited weekend of knowledge, sharing, and camaraderie. The St. Petersburg Conference is shaping up to be Cure JM's biggest and most exciting conference yet!

Some highlights will be:

intimate break-out sessions about coping with real life issues facing JM patients, families, and caregivers
an educational forum and Q&A with prominent Juvenile Myositis researchers
special sessions for dads, moms and grandparents who care for children with JM
a teens and tweens cyber lounge and workshop on transitioning from pediatric to adult care
a Kids' Fun Camp
the St. Pete Beach Classic, where Cure JM runners, walkers and volunteers will help raise funds for JM research. This is a high point of the weekend!

Learn more here or contact us at info@curejm.org or (780) 487-1079.

Cure JM Funding New Research Grants in 2015

Former Cure JM Vice President of Research Patti Lawler with 2014 Cure JM grant recipients Dr. Ann Reed, Dr. Susan Kim and Dr. Dawn Wahezi.

Thanks to you, Cure JM will be awarding up to six new research grants in 2015.

To award these grants, Cure JM has established a partnership with CARRA, the Childhood Arthritis and Rheumatology Research Alliance. CARRA is a North American organization of more than 400 pediatric rheumatologists, researchers, and research coordinators.

The first round of 2105 grants will be awarded later this month. The second round of grants will be awarded in September.

Physicians and researchers from across North America are invited to submit their proposals by July 31st. Learn more here.

Cure JM awarded three grants in 2014:

an Established Investigator Research Grant, awarded to Ann Reed, MD, Chair of the Department of Pediatrics, Duke University School of Medicine. This grant is for a Predictive Model of Disease Outcomes using Computational Biology Modeling in Children with Inflammatory Muscle Disease. The research will be conducted at Mayo Clinic to determine associations between disease outcomes and various features of Juvenile Dermatomyositis (JDM), which may lead to the prediction of which patients would benefit from particular treatment choices.

a Pilot Study Research Grant, awarded to Susan Kim, MD, Boston Children's Hospital. This grant is for Lymphocyte Repertoire in Juvenile Dermatomyositis . This study will use "next generation sequencing" to study detailed T & B cell differences in JDM. This should lead to a better understanding of changes in the immune system, which may help to advance the understanding of JDM and improve future outcomes.

a Pilot Study Research Grant, awarded to Dawn Wahezi, MD, Children's Hospital at Montefiore. This grant is for Premature Atherosclerosis in Juvenile Dermatomyositis. This study aims to identify which risk factors may be the most significant indicators of early heart disease in children with JDM.

In addition to these grants, Cure JM is also funding research at Seattle Children's Hospital, Stanford University, the George Washington University Myositis Center, and the Cure JM Program of Excellence in JM Research at Stanley Manne Children's Research Institute, affiliated with Ann & Robert H. Lurie Children's Hospital of Chicago.

Thank you for making this research possible.

Click to learn more about Cure JM-funded research.

Upcoming Events

3rd Swing For a Cure Golf Event
Thursday, April 23
Covington, LA

Neon Run Temecula
Saturday, April 25
Temecula, CA

Jam for JM
Saturday, May 16
Normal, IL

Dinner, Auction and 90's Neon Party benefiting Cure JM
Friday, May 29
Hillsboro, OR

Chuck E. Cheese party benefiting Cure JM
Friday, May 29
Mentor, OH

Graceyfest 2015: Music, Food and Fun
Sunday, May 31
Mt. Washington, KY

Basket Raffle and Silent Auction
Sunday, May 31
Rutland, VA

Dmitri's Mission to Find a Cure
Saturday, June 6
Mineville, NY

2nd Annual Cowboy Brad Concert
Saturday, June 27
Estes Park, CO