Cure JM Foundation Newsletter
Your generosity helped fund the International Consensus Conference in Paris in June. As a result of this conference, myositis research is taking an important step forward.
Earlier this year, you heard that your generosity would help fund the International Consensus Conference. On June 9th and 10th, Myositis researchers from around the world came together in Paris, France to develop standard measures of "improvement" for myositis patients.
What was the result of this conference?
Experts were able to agree on measures that define improvement of myositis. These measures will apply to both adult and juvenile myositis patients (including dermatomyosits and polymyositis). Researchers also developed response criteria for minimal, moderate and major improvement.
This is very important for future research. These new definitions of improvement will be the end goals for future myositis clinical trials. And this should help facilitate future drug development for adult and juvenile myositis.
A standard measurement for myositis improvement is also expected to improve collaboration among myositis researchers.
Thank you! Because of you, Juvenile Myositis research is taking an important step forward.
"A Moth Eaten World", a collection of poetry written by Suzanne Edison, tells the story of her family's journey with Juvenile Myositis.
Suzanne Edison tells her family's story of Juvenile Myositis, and those of other parents who have children living with chronic illness, in her poetry collection, "The Moth Eaten World."
The poems reflect upon a parent's journey with an ill child, both its darkness and triumphs.
Suzanne's daughter Flora was diagnosed with Juvenile Dermatomyosits (a form of Juvenile Myositis) at the age of 6. Flora couldn't walk upstairs, fell over easily and struggled with the basic tasks.
Like many families fighting Juvenile Myositis, the last seven years have been a roller coaster for Suzanne and her family. Suzanne skillfully walks the reader through this challenging journey using metaphors and mythology. Her lines are steeped with memories of loss, love and her desire to make her daughter well.
“After picking up Suzanne's book from my mailbox down the street, I sat in my car and read the entire book cover to cover,” said Cure JM co-founder Shari Hume. “Through tears, I felt like someone understood the pain and fear of parenting a child with a chronic illness. Through smiles and laughter, I felt like someone understood the hope, the powerful love, and a more meaningful life in parenting a child with a chronic illness.”
"A Moth Eaten World" is available for $14 by emailing suzanne.edison@curejm.org. It will also be available at Cure JM's National Conference in San Jose, CA October 3-5.
Proceeds from the book benefit Cure JM.
An excerpt from "A Moth Eaten World":
No one wants to talk about the sick child. Corrugated sadness, apologies baited with fear the mousetrap faces of those with healthy kids, shut.
No body wants to stand too close to disease. The thieving rat reaches into pockets, through the body's bars, swipes skin-lush, flown-open dreams.
Stuck in binocular vision, I watch my child teeter towards the ground. I should move, sit on her end of the seesaw, leave the others up in the air.
Liam is walking to raise money to find a cure for himself and other children battling Juvenile Myositis
Imagine, you are told by doctors your child has a rare disease - something called Juvenile Myositis (JM) that is so rare many doctors have never heard of it.
Then, while surfing the internet you discover Cure JM Foundation, the only nonprofit dedicated to this rare disease.
Even more surprising, you discover that the Cure JM Annual Conference for families is one week away.
You have only days to decide if you will fly across the country, away from your sick child, figure out how to pay for it, get the time off work, and arrange care for your other children while you are away.
You decide to make it happen because this may be your only chance to learn about this rare disease. This could be life-changing for your child.
This is exactly what happened to the Warr Family when five year old Liam was diagnosed. After 2 1/2 years of being misdiagnosed they finally had hope for finding some help for their son. Liam's extended family quickly cashed in all their frequent flyer miles to send Kirsten, Liam's mother, to Seattle for the conference. Meanwhile, Liam started a quick decline, choking on food as the muscles in his throat became weaker.
At the Cure JM conference Kirsten unfortunately learned of the severity of her son's disease, but also of the hope for remission, the best treatments available, and the support of other parents who were going through the same experience. She listened to the best JM doctors in the country. She met other JM children; some who were doing well, others who were not. She learned from other JM parents and witnessed them gaining support from each other as well as passionately raising funds for a cure.
Kirsten brought her wealth of knowledge home and felt confident finding the appropriate specialist and discussing the aggressive treatment Liam needed. In addition, Kirsten was so inspired by Cure JM's mission she started 'Liam's Run' and raised over $13,000 for Cure JM!
The Cure JM Annual Conference takes place due to thousands of volunteer hours and funding from JM families themselves.
"Liam is a stronger boy emotionally and physically because of the knowledge and strength I gained from the conference," says Liam's mom. "And that is something that I will be forever grateful and thankful for.
Learn more about the Cure JM National Conference in San Jose, CA October 3-5, 2014.
Come together with other Cure JM families for an unforgettable weekend of connecting, learning and fun
The Cure JM National Conference registration is only 6 weeks away!
Register now to attend or help from home
Join us at the San Jose Marriott Hotel in San Jose, CA, October 3rd-5th for the annual Cure JM family educational conference
2014 Conference Highlights:
All participants are invited to attend a General Session with an elite group of JM experts who will give an update on the latest research and answer audience questions.
Families will get the latest information on Juvenile Myositis diagnosis, treatment, and research, participate in small group educational sessions and connect with other JM families
Grandparents will get the latest information on Juvenile Myositis and attend a Grandparent Workshop focused on the special role that grandparents play in their families and the JM community
Children, Teens and Young adults will enjoy their own fun activities while the adults are in the educational sessions
And Much more...
Learn more and register here
Cure JM National Conference
October 3-5
San Jose, CA
2nd Annual Swing Fore Kelsi Golf Tournament
October 20
Douglasville, GA
Juvenile Myositis is a rare, life-threatening autoimmune disease affecting over 17,000 children and adults in the U.S. alone
Provide support for families coping with Juvenile Myositis
Raise awareness of Juvenile Myositis
Fund research that will ultimately lead to a cure
Support Cure JM when you shop online with 
Newsletters
