Cure JM Foundation Newsletter

October 2015

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Cure JM is Top-Rated Nonprofit for 5th Straight Year

Cure JM is a Top-Rated Nonprofit for the fifth straight year.

Cure JM has been honored with a prestigious Top-Rated Award by GreatNonprofits for the 5th straight year. GreatNonprofits is 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 in part 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.

This award also shows that Cure JM is having a real, on-the-ground impact for families. In the past year, your outstanding support has made it possible for Cure JM to:

Fund six new research grants to advance Juvenile Myositis research at the National Institutes of Health, the Mayo Clinic, Boston Children's Hospital, Children's Hospital at Montefiore, Seattle Children's Research Institute, and The Research Institute at Nationwide Children's Hospital and The Ohio State University.
Continue to fund two Juvenile Myositis Research Centers, one at Ann & Robert H. Lurie Children's Hospital of Chicago and another at George Washington University in Washington, D.C.
Hold a successful National Family Educational Conference and Fundraiser in San Jose, CA; the National Conference helps connect JM families from around the world as they learn about the latest in JM research and treatments
Provide educational materials and peer support to over 250 newly diagnosed families
Sponsor a medical conference in partnership with Stanford Medical School that brought together more than 60 doctors and medical professionals from across the country to learn about the latest in Juvenile Myositis treatments and research
Attend two international medical conferences to connect with the international JM research community and help advance JM research

"Cure JM is honored to be named a Top-Rated Nonprofit for the fifth year in a row," says Shari Hume, Vice President and Co-Founder of Cure JM. "We are very proud to have earned an average review of 5 out of 5 stars -- this shows that Cure JM is making a difference for families affected by Juvenile Myositis."

Join over 50 families at the Cure JM National Conference at the Sirata Beach Resort in St. Pete Beach, FL, January 15-17, 2016.

Teens & Tweens will make new friends in the Teen Cyber Lounge, hands-on Photography Workshop and a physician-led workshop on Transitioning to Adult Care. Kids age 3-10 will enjoy the supervised Kids' Fun Camp.

In the General Session, prominent JM researchers and physicians will answer your questions and give an update on the latest in JM research and treatment options.

Register now for the Cure JM National Conference

The Cure JM National Educational Conference and Fundraising Event will be in St. Pete Beach, Florida, January 15-17, 2016 at the Sirata Beach Resort.

Join over 50 other Cure JM families for an unforgettable weekend at the 9th National Conference. The conference is Cure JM's biggest event and fundraiser of the year.

Some highlights will be:

A Special Session for Newly Diagnosed Families
Small group educational sessions about real life issues facing JM patients, families and caregivers, including sessions on Nutrition, School Resources and Improving Quality of JM Care (facilitated by CARRA Researchers)
A General Session for all participants, where prominent JM researchers and physicians will answer your questions and give an update on the latest in JM research
Special sessions for dads, moms and grandparents who care for children with JM
Sessions for Teens, Tweens and Young Adults including a workshop on transitioning from pediatric to adult care and social time to make new friends
A Kids' Fun Camp where patients and siblings will enjoy activities, have fun and form lasting friendships with kids just like them; this year's Kids Fun Camp has a Star Wars theme
The Walgreens St. Pete Beach Classic, where Cure JM runners, walkers and volunteers will help raise funds for JM research. This is Cure JM's single largest annual fundraiser. We need YOUR help to make it a success so we can keep funding critical research for our kids. This is a high point of the weekend!

Learn more here or contact us at or (780) 487-1079.

Cure JM President Attends International Juvenile Myositis Conference

Mitali Dave

Mitali Dave, President of Cure JM's Board of Directors, recently attended an International rheumatology conference focused on JDM. At the conference Mitali helped spread awareness of Cure JM to international researchers, physicians, and patient advocates.

Over the summer, Cure JM President Mitali Dave attended a joint conference of physicians, researchers and patient advocates from across Europe.

The meeting was a joint conference between the European League Against Rheumatism (EULAR) and the Pediatric Rheumatology Europe Society (PReS). Every three years these two adult and pediatric organizations in Europe come together for a joint conference. This year the pediatric organization focused their conference on JDM (Juvenile Dermatomyositis, a form of Juvenile Myositis).

At the conference, there were several JDM presentations and Mitali was able to connect with many international researchers, physicians and patient advocates.

"This was a wonderful opportunity for Cure JM to explore how we can further engage with the international JM community," says Mitali Dave. "We look forward to increasing our international collaboration with both JM research groups and JM patient advocacy groups."

Plans are already underway for more international collaboration in the coming year and Cure JM is excited to be a part of the future of international collaboration on JM research.

One Aunt's Story of Donating an Old Car to Benefit Cure JM

Pam and Rachel

Pam and her niece Rachel. Pam recently donated her old car to Cure JM in honor of Rachel. Thank you, Pam!

Story written by Pam R., Aunt to Rachel; Rachel was diagnosed with Juvenile Myositis at the age of 3.

My family recently celebrated the 15th birthday of my beautiful niece, Rachel. Every milestone with Rachel is reached with great enthusiasm. Not just because she is a friendly, funny, loving, caring individual but because at the age of 3 she was diagnosed with Juvenile Dermatomyositis.

Over the years there have been a lot of tears. Rachel has had to endure a series of uncomfortable and painful medications, operations, and even bullying. But now we are very grateful that she has reached the age of 15 and is doing so well.

As family members of the children who suffer with JM, we wish we could do more. But what we can do is support our loved ones and contribute to Cure JM, making critical research possible. I know I'd give everything I have to make sure Rachel stays healthy and well.

Recently, I decided to donate my old car to benefit Cure JM. The process is so simple (an online form and then a phone call and it was done!) and the results will be a contribution in the amount of the car sale.

I'm angry that anyone has to go through the sorrow and pain of Juvenile Myositis. But I'm putting my anger aside and replacing it with hope. And in Rachel's name, I am donating to Cure JM so that they can fund the research that Rachel needs.

I appreciate Cure JM for all they have done for my family and all the research that they make possible.

I hope you will consider helping Cure JM in similar fashion. Happy Birthday Rachel!

Note: It's never been easier to donate a car to benefit Cure JM! Cure JM has partnered with the vehicle donation service "CARS" to make donating your vehicle easier than ever.

CARS accepts most cars, trucks, trailers, boats, RV's, motorcycles, off road vehicles, heavy equipment and most other motorized vehicles. -- running or not.

Simply click here or call 855-500-RIDE seven days a week to speak to a representative. CARS will schedule a pickup of your vehicle at no cost to you, sell the vehicle and send the net proceeds directly to Cure JM. As soon as the vehicle is sold (and it is determined that your donated car qualifies for a deduction of more than $500) CARS will mail you an additional receipt and will include an IRS Form 1098-C.

We're standing by to help at .

THANK YOU New Extended Leadership Team Members

THANK YOU to the Cure JM parents, grandparents and patients who step forward to make a difference every day.

Cure JM is pleased to announce that 2015 has been a year of many new additions to the Extended Leadership Team.

The Extended Leadership Team plays an important role at Cure JM, working with the Board of Directors to carry out our mission to support families coping with JM, raise awareness of JM, and fund research that will ultimately lead to a cure.

The Extended Leadership Team consists of:

The Advisory Council, a committee that helps plan and implement Cure JM's strategic initiatives such as collaboration with the medical and research communities, fundraising, family and young adult outreach, PR and social media outreach, and grant writing.

The Family Support Network, a global peer-support network that provides support and educational materials to families coping with the Juvenile Myositis diagnosis.

The Fundraising Coaches, a network of Cure JM parents who have held fundraising events. The Fundraising Coaches are standing by to help YOU have fun while hosting your own event or online fundraiser.

Joining the Advisory Council are:

Juanita Pannocchia and Stephanie Martin, Research Committee
Rob Ramsey and Carol Schwartz, Fundraising Committee
Erin Curtis and Haley Ibrahim, Fundraising Committee and Fundraising Coaches for Online Fundraisers
Suzy Clement, Fundraising Committee and Fundraising Coach for Endurance Events
Erin Duval, Fundraising Committee and Family Support Representative

The new Fundraising Coaches are:

Kristen Prescott, Fundraising Coach for T-Shirt Fundraisers
Jana Sall, Fundraising Coach for Online Fundraisers
Donna Spalding, Fundraising Coach for Cross-Fit Events and "Coins for a Cure" Events

New Family Support Network Representatives are:

Julie Shevlin, Director of the Family Support Network (Julie also continues to serve on the Advisory Council Fundraising Committee and as a Fundraising Coach)
Julie Garst, Family Support Representative for the Midwest
Sissy Taylor Family Support Representative for Texas

To contact any of the members of the leadership team, visit www.curejm.org or email .

Five-Year-Old Daisy speaks about having JDM at the Miss Louisiana Pageant

Daisy with Miss Louisana

Five-year-old Daisy Prescott recently spoke about having Juvenile Myositis at the Miss Louisiana Pageant in Monroe, LA. Pictured here with the former Miss Louisiana, Lacy Sanchez.

FFive-year-old Daisy Prescott recently spoke about having Juvenile Myositis at the Miss Louisiana Pageant in Monroe, LA.

"I have a disease called JDM," said Daisy, on stage in front of over 500 people."And I need a cure." Many in the audience were moved to tears as Daisy spoke.

Daisy was invited to the pageant by the former Miss Louisiana, Lacey Sanchez, who became a friend of Daisy's after meeting her at Our Lady of the Lake Children's Hospital in Baton Rouge. Lacey was impressed with how Daisy was an advocate for her disease at such a young age.

Daisy was diagnosed with Juvenile Dermatomyositis (or JDM, a form of Juvenile Myositis) two years ago at the age of three.

Daisy and her family have been advocates for JM awareness and research since Daisy's diagnosis. For two years they have relentlessly focused on finding a cure for Daisy. They have raised funds for Cure JM and JM research, participated in research studies, and encouraged other families to get involved.

"Getting involved with Cure JM has helped our family immensely," says Daisy's mom Kristen. "Helping Cure JM raise awareness and raise funds for research gives us a sense of control over this disease."

"We feel good that we are helping make a difference for Daisy and the other children," Kristen continues. "We will never stop fighting for a cure."

Kristen also serves as a Cure JM Family Support Representative and Fundraising Coach. In these roles, Kristen enjoys helping other families cope with the JM diagnosis and raise funds for much-needed research. Contact Kristen at .

Q & A with Rheumatologists & JM Researchers

Dr. Ann Reed. Chair of the Department of Pediatrics, Duke University School of Medicine and member of the Cure JM Medical Advisory Committee.

Rheumatologists and JM researchers are answering your questions. Questions can be submitted to .

Parent Question: It seems as if there are geographic areas where JM is more common than in other areas. Do you think this means there is an environmental issue in those areas?

Answer: Provided by Dr. Ann Reed, chair of the Department of Pediatrics, Duke University School of Medicine

There is no question we think we see clustering or increased reporting of JDM in specific areas around the same period of time. However, good data has been difficult to obtain and understand. There have been reports of exposures including infections (most likely viral) (3) or seasonality to subtypes of disease (4) and exposure to ultraviolet radiation (5) which all point to an environmental stimulus being involved as a potentiator for the disease onset. This may explain why a group of children living in an area may have the same exposures and thus develop JDM.

(3) Manlhiot C, Liang L, Tran D, Bitnun A, Tyrrell PN, Feldman BM.Assessment of an infectious disease history preceding juvenile dermatomyositis symptom onset.

Rheumatology (Oxford). 2008 Apr;47(4):526-9. doi: 10.1093/rheumatology/ken038. Epub 2008 Feb 27.

PMID: 18304939

(4) Vegosen LJ, Weinberg CR, O'Hanlon TP, Targoff IN, Miller FW, Rider LG.Seasonal birth patterns in myositis subgroups suggest an etiologic role of early environmental exposures. Arthritis Rheum. 2007 Aug;56(8):2719-28.

Brief report: ultraviolet radiation exposure is associated with clinical and autoantibody phenotypes in juvenile myositis.

(5) Shah M, Targoff IN, Rice MM, Miller FW, Rider LG; Childhood Myositis Heterogeneity Collaborative Study Group.

Arthritis Rheum. 2013 Jul;65(7):1934-41. doi: 10.1002/art.37985.

PMID: 23658122

Cure JM National Conference

Cure JM’s 9th National Conference
January 15-17, 2016
St. Petersburg, FL

Upcoming Events

IronMan to benefit Cure JM
Sunday, October 11
Louisville, KY