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.
Anna and over 100 Cure JM teens, children, parents, grandparents, friends and other supporters will come together for a weekend of connecting and learning at the National Conference in San Jose, CA October 3rd-5th.
Imagine being a teen with a rare, painful and often misunderstood disease.
Every day is a new challenge, often filled with medications, doctors, hospitals and worry about the future. All while trying your best to live the life of a normal teen.
You often miss school and social events because you don't feel well. You get sick more easily and can't go in the sun like your friends. Everything seems a bit harder than it should be.
Then imagine you have never met anyone else with the same disease. It seems like no one else understands what you go through.
And then you hear that dozens of teens, kids and young adults battling Juvenile Myositis, along with their families, come together one weekend each year.
You know that this is your chance to finally come together and make friends with other kids who understand and accept you.
And that is why teen Anna R. is looking forward to attending her second Cure JM National Conference in October in San Jose, CA.
"Attending the conference is my opportunity to meet others who have had similar experiences," says Anna. "They understand what I have been through."
At the Cure JM National Conference, teens, children and young adults often form friendships and stay in touch throughout the year. This often carries them through the toughest of times.
Anna was diagnosed with Juvenile Myositis when she was 15 years old. "It's been a struggle," she says. "But knowing so many people are working towards a cure gives me hope.
Join Anna and over 100 other participants at this year's National Conference.
Register now to hold your spot and book your hotel room by September 12th.
This year, the National Conference has even more of what you have asked for:
- Families will get the latest information on Juvenile Myositis treatment, and research, participate in small group educational sessions and connect with other families during the welcome reception, recognition dinner and casual social times throughout the weekend
- Teens and Tweens (11 years and older) will casually socialize in a Lounge / Cyber Café and enjoy a hands-on photography workshop presented by professional photographers
- Children (age 3-10 years) will enjoy adult supervised kids' activities including arts, crafts, music, and more, all in a fun and supportive environment where they will meet other kids, make new friends and have a great time
- Grandparents will get the latest information on Juvenile Myositis and attend a Grandparent Educational Workshop focused on the special role that grandparents play in their families and in the JM community
- 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
- And much more
Learn moreabout the Cure JM National Conference in San Jose, CA October 3-5, 2014. Email info@curejm.org with any questions.
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
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