Cure JM Foundation Newsletter
Thank you for helping Daisy get the treatment she needs and get back to being a kid again.
Meet Daisy. When Daisy was just three years old, she was diagnosed with Juvenile Myositis (JM).
Normally a fun-loving, charismatic little girl, she was so weak that she could barely play or walk.
But your generosity helped to establish and fund the Cure JM Program of Excellence in JM Research at Ann & Robert H. Lurie Children’s Hospital of Chicago where Daisy is treated.
Soon after her diagnosis, Daisy's parents began a series of long, cross-country trips to Chicago to consult with the Cure JM Program of Excellence in JM Research.
Daisy's treatments are not easy. She sits for hours at a time while receiving IV infusions, she endures weekly chemotherapy treatments and she takes dozens of medications per day.
"I have a lot of hurt," says Daisy, now four years old. "And I take a lot of yucky pills."
But Daisy's family is optimistic about her future.
"I believe in my heart that without the Cure JM Research Center at Lurie Children's, Daisy would not be as well as she is today," says Daisy's mom.
"Today we walked around town without using a stroller which was not possible just a few months ago."
Because of you, Daisy is getting the treatment she needs so she can get healthy and get back to being a kid again.
Gary is looking out the window during a recent hospitalization due to complications from calcinosis. Thanks to you, he starts his new calcinosis treatments this week.
Your generosity has helped fund a Pilot Calcinosis Trial at the George Washington University Myositis Center. The GWU Myositis Center team is conducting a study for a medication (sodium thiosulfate) which will be given by laser therapy to treat calcinosis.
Up to 50% of children with Juvenile Myositis will develop "calcinosis", one of the most debilitating complications of JM that currently has no effective treatments.
"Calcinosis" is the development of small lumps of calcium under the skin, in the muscle, or on the bones. The lumps may feel like rocks under the skin and can range in size from a small pebble to a large softball. These calcium deposits can lead to significant pain and disability.
However, new treatments offer hope to children like 7-year-old Gary.
Gary is pictured here looking out his hospital room window during a recent hospitalization due to complications of calcinosis.
Both of Gary's elbows are wrapped in gauze because calcium deposits broke through his skin and became severely infected.
For many children like Gary, calcinosis lumps can become infected and painful, and sometimes need to be surgically removed. Calcinosis is so uncomfortable it can make a child miserable, unable to focus at school or at home.
But thanks to you, new treatments are being tested. The Pilot Calcinosis Trial at the George Washington University Myositis Center gives hope to children like Gary that someday they won't have to live with the pain of calcinosis.
Thank you for making this research possible.
"Pathogen Wars" is an action-packed video game about the battles being waged by a healthy immune system. All proceeds benefit Cure JM Foundation.
16-year-old Owen Leddy wanted to develop a computer game to give players a first-hand view of the intense internal battles waged by their immune system.
But what began as a hobby soon turned serious when a classmate was diagnosed with Juvenile Myositis (JM).
"I was diagnosed with JM when I was 15 years old," says Leddy's classmate Anna. "It has been a struggle. But knowing so many people are working towards a cure gives me hope."
"I knew from the beginning that I wanted Pathogen Wars to raise money for medical research," says Leddy. "When I learned that Anna had JM, I saw it as a chance to make a difference."
So Leddy developed Pathogen Wars, a computer game about a healthy immune system.
Pathogen Wars is an action-packed game in which the player takes control of a variety of types of white blood cells and wages battle against a formidable host of viruses, bacteria, fungi, and other microscopic foes.
100% of proceeds from Pathogen Wars will go to Cure JM Foundation.
"Cure JM Foundation doesn't get the attention it deserves," says Leddy. "I thought I could make a difference."
To download Pathogen Wars for $1.99, visit gamefaceinteractive.com Please contact info@curejm.org with any questions.
Maura and her grandmother enjoying a break at the Cure JM National Conference.
Now is the time to make your plans!
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 during the general session, 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 Educational Workshop focused on the special role that grandparents play in their families and the JM community
Children (3 to 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.
Teens & Tweens (11 to 17 years) will casually socialize in a Lounge / Cyber Café and enjoy a hands-on photography workshop presented by a professional photographer
Families will connect with other Cure JM Families at the casual meet-and-greet on Friday night, recognition dinner Saturday night and casual social time throughout the weekend
Families will also be participating or volunteering at the San Jose Half Marathon and 10k on Sunday, October 5th
And Much more!
View the complete schedule here
Any questions? We are standing by to help. Contact info@curejm.org or (760) 487-1079
Suzy (right) pictured here with a fellow Cure JM mom and friend Erika. Suzy and Erika met at a Cure JM conference years ago and continue to reconnect at Cure JM conferences.
written by Suzy C., Cure JM Mom
Why do I attend the Cure JM Conference?
I attended my first Cure JM conference in 2009. I simply can't describe how it felt to meet other families, share stories, and compare notes. Most of our friends just couldn't comprehend what it means to deal with this disease day in and day out. It left us feeling isolated and alone, especially as the initial shock wore off and the "new normal" of chronic illness became our reality.
...for the support
I have learned so much and felt so supported by the Cure JM community. This support has meant more to our family than I can say.
...for the education
The opportunity to hear about the latest developments in JM research directly from the doctors who are actually DOING the research, as well as have our own questions by them answered is actually kind of unbelievable. How else could a regular family like ours ever have access to the preeminent JM experts in the country? It is absolutely incredible.
...for my daughter
I love having my daughter attend as well, as it gives her the opportunity to meet other kids who have the same challenges as she does. She's somewhat reserved and doesn't always easily fall in with a group of new people, but she made one really good connection with another girl her age and that was all she needed. She gets so much out of that friendship and I'm so grateful for it. I also think it's really important for her to have exposure to this group of people who are so motivated to conquer this disease. I want her to know that we are all here, fighting for her, and I want her to know that she can fight as well.
...for myself
For me personally, attending my first Cure JM conference led me to begin running - for the first time ever - at age 38, so that I could participate in the half marathon that was taking place there. I have never been an athlete, and I never could have predicted that running would subsequently become such an important part of my life. Aside from the obvious health benefits, it has become one of my most important coping tools. It helps me stave off depression and helps me stay strong to continue fighting this disease. It literally keeps me sane.
The Cure JM National Conference means so much to our family, I hope to see you there.
Learn more and register here
3rd Annual Mason Smedley Memorial Ride
Saturday August 9
Hillsboro, OR
Family Potluck Picnic
Sunday August 17
Montgomery, NY
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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