Cure JM Foundation Newsletter

November 2014

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Your Generosity is Funding Three Research Grants

Cure JM Vice President of Research Patti Lawler with 2014 Cure JM / CARRA Grant Awardees: Dr. Ann Reed, Dr. Susan Kim and Dr. Dawn Wahezi

Thanks to your generosity, the recipients of the 2014 Cure JM / CARRA research grants were recently announced at the Cure JM National Conference.

The three grants awarded were:

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.

To award these grants, Cure JM has established an exciting new 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 generosity of the Cure JM community and supporters is making this new research possible," says Lawler. "We are excited about the far-reaching impact this research will have for children and adults battling Juvenile Myositis."

The 2014 Cure JM National Conference Brought Together Families, Researchers and Physicians

The Cure JM National Conference brought together children, teens, families and physicians for a weekend of learning, connecting and participating as the official charity at the San Jose Rock'n'Roll half marathon by running or volunteering

Last month, over 60 families came together with physicians and researchers for the 8th annual Cure JM National Educational Conference.

Families heard directly from the researchers about the new research being funded by Cure JM. In addition to the three research grants listed above, Cure JM is funding a study at Seattle Children's Hospital to study the gastrointestinal bacterial tract in JM patients and a study at Stanford University investigating genetic risk factors for calcinosis.

Other highlights from the Family Educational Sessions were:

a grandparents session
a nutrition workshop
coping skills session
a workshop for newly diagnosed families
a session on teens transitioning to adult care
a teen photography workshop & kids' fun camp
and more

View the complete conference recap and content from the educational sessions at www.curejm.org/sjrecap.

The National Conference is also a fundraising event, with over $175,000 raised so far for research; donate or track the progress here.

"Thank you to all of the families who participated in the conference and fundraising efforts," says Cure JM Chairman Rhonda McKeever. "Juvenile Myositis is a rare disease and research progress is driven by the involvement of JM friends and families." If you would like to get involved with Cure JM, please email info@curejm.org or call 760-487-1079.

Save the date for the next Cure JM National Conference in St. Petersburg, FL, January, 15-17, 2016.

Cure JM and Idera Pharmaceuticals Partner Together On Potential New Myositis Therapy

idera logo

Idera Pharmaceuticals recently announced plans to develop a new potential therapy for dermatomyositis and polymyositis

A New Potential Therapy for Myositis Advances towards Clinical Trials

Idera Pharmaceuticals, a biopharmaceutical company based in Cambridge, Massachusetts, recently announced plans to develop a new potential therapy for dermatomyositis and polymyositis.

Idera Pharmaceuticals -- a pioneer in the development of nucleic acid therapeutics -- is conducting research on a new way to disrupt the cycle of inflammation and tissue damage that occurs in people with myositis.

The company's investigational drug candidate IMO-8400 is designed to block the activity of certain Toll-like receptors, or TLRs, which play an important role in the body's immune system. Myositis occurs when the immune system attacks the body's own cells and tissues, and it is believed that TLR antagonism could address symptoms by reducing the over-activation of the immune system.

Idera is currently conducting early-stage research with IMO-8400 to support future clinical development. In addition, Idera is working with organizations including Cure JM, as well as leading medical and scientific experts, to learn more about the disease and design future clinical trials.

"We are very excited and pleased to work with Cure JM and other myositis experts who share our commitment to advancing new therapies that may improve outcomes for people living with this rare and painful inflammatory muscle disease," said Kate Haviland, Vice President of Rare Diseases at Idera Pharmaceuticals. "We are currently working hard to complete the early-stage research and planning required to move our investigational drug candidate IMO-8400 into clinical development for polymyositis and dermatomyositis."

To learn more about Idera Pharmaceuticals and its TLR antagonism technology, visit www.iderapharma.com or email Cure JM at info@curejm.org.

Penny Lane Performs Live at Cure JM Conference

Penny Lane Performing

Penny Lane performs live at the 2014 Cure JM National Conference held in San Jose, CA in October

One highlight of the 2014 Cure JM conference was live entertainment provided by Samantha Martin. Samantha, who performs under the name Penny Lane, performed two songs live and also played her video, "Soldier On."

Two years ago, Samantha collaborated with her father to write the song "Soldier On" in honor of all the children and families who struggle with the pain and heartbreak that Juvenile Myositis can bring.

The ups and downs of Juvenile Myositis are something that Samantha knows all too well -- Samantha was diagnosed with Juvenile Myositis when she was just three years old.

"I wanted those kids who have Juvenile Myositis and their families to know that there is hope despite the seemingly endless treatments and difficulties," says Samantha. "I'm an example of that. I hope to stay one for a long time."

Martin's song "Soldier On" is available on iTunes and all proceeds go to Cure JM Foundation. Click here to view the music video.

"My video for the song ends with still photos of dozens of children who have Juvenile Myositis – some of whom have died from the disease or its complications, many others of whom are still battling it, most holding signs that read 'I need a cure,'" said Martin. "We need to find a cure so no other child has to suffer from it again."

Cure JM Families Recognized at the National Conference

Another highlight of the National Conference was to recognize some of the many individuals and families who make a difference within the Cure JM community.

David and Stacia Glancy received the 2014 Cure JM Champion Award in appreciation of their exceptional support in advancing Juvenile Myositis research

The Cure JM Champion Award is given to a person or family who has made a significant difference for Cure JM and the children battling this disease. This year's award was presented to David and Stacia Glancy in appreciation of their exceptional support in advancing Juvenile Myositis research.
Read the full story.

The Cure JM Hero Awards are presented at the National Conference and recognize outstanding achievements in raising awareness of Juvenile Myositis and raising funds for research. The 2014 Cure JM Heroes awards were presented to:

Samantha Kountz-Edwards
Robert, Carol, Anna and Elliot Ramsey
Steven and Dominique Wessel
Kenny and Leslie Retif
Erin and Dmitri Duval
Erika Bradford and Family
Sissy, Brett, Kaci and Kory Taylor

Read the full story

JM Co-Founder Shari Hume with 2014 Mason Miracle Award Winner Sue Carpenter and Cure JM Foundation Chairman Rhonda McKeever

The Mason Miracle Award is given to a person or family who carries on the spirit of Mason Smedley and demonstrates the unfaltering courage, optimism and perseverance that Mason showed us all. This year's Mason Miracle award was presented to Sue Carpenter. Sue is an anchor of support for the entire JM community. In addition to supporting families, Sue has also made 100 quilts for children battling JM, and she even made a quilt for Mason. Read the full story.

The Cure JM Legacy Award was presented to Patti Lawler. This award is given to a person or family who has made an exceptional, long-lasting impact for Cure JM and the advancement of JM research. The first-ever recipient of this award is Patti Lawler. Patti has served on the Cure JM Board of Directors for seven years. Her long list of accomplishments has been transformational in advancing Juvenile Myositis research and she will leave a legacy for many years to come. Read the full story.

Thank You 2014 Conference Sponsors