Cure JM Foundation Newsletter
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Happy Birthday, Cure JM!
This week, the Cure JM Foundation is 10 Years Old! We're celebrating a Decade of Research and Support!
- More than $5 million has been raised for JM research and education
- 40 research articles have been published with Cure JM support
- 4 conferences for the medical community have been held
- Family support network includes more than 1,500 patients from 32 countries
- New grandparent support and advocacy network has been launched
- 7 annual educational conferences for families have been held
- New toolkits have been developed and are coming online to help families fundraise
- More than 13,000 people have been reached through the Cure JM social media presence.
Happy Birthday, Cure JM!!!
Introducing the Grandparents Network
for grandparents
When you're ready to join the fight against Juvenile Myositis... When you want to reach out to other grandparents... You're ready to become part of the Grandparents C.A.R.E. network!
The Grandparents C.A.R.E. Network stands for:
C - Connect with other grandparents and families
A - Advocate for children battling Juvenile Myositis
R - Rally to be involved in your family and in Cure JM
E - Empower yourself by learning about Juvenile Myositis
The Grandparents C.A.R.E. network is free and easy to join. Join now
at www.curejm.org/care or call Cure JM at 760-487-1079.
When you register you will receive a free Welcome Kit and be greeted by a Grandparents C.A.R.E. Representative. Meet the Grandparent Representatives here.
by Emily Morgan
As a mother, I want my child to “rock this,” as a mother of a child with JDM, I want her to “rock this” like no other!! For that reason, July 25th was a day like no other. A few months before, Morgan had decided to ‘try out’ for the West Lafayette Homecoming Festival Queen. The day began with a hair and make-up appointment followed by a quick bite to eat and a photo by the tree in the front yard (an absolute must at the Bradford household on special occasions) and we were off for her formal interview with the judges.
Morgan was introduced by the Master of Ceremonies, she gave her name and age 16 (the day before her 17th birthday). She shared that she was attending our local Career Center studying in the Health Careers Program. Then, she explained Cure JM. She explained what it is like to battle this disease and how she has struggled with dermatomyositis for the last 12 years….and counting. The audience applauded!! Great job Morgan!!
Now we are able to travel the state of Ohio and spread awareness on Cure JM. This is an opportunity like no other to meet others, hand them a Cure JM bracelet, a Cure JM flyer, and fly balloons from the convertible she is riding on in the parades. What a great way to spread awareness! Read the full story online.
Coping with the New Normal: Understanding the Diagnosis
by Kim Poston Miller
Author of Living with Juvenile Arthritis: A Parent's Guide
Part one: Understanding the diagnosis
Before you can go into battle, you must know your opponent. The first step to battling JM is learning about the disease. While it is extremely important to educate yourself and family members, it is equally important to exercise some restraint in this area. While knowing what you are up against can create confidence, too much information too soon can cause depression, reduce coping ability, and if acquired incorrectly or out of context, may not even be applicable in your case.
In order to avoid this trap, consider a targeted approach to research and education:
1. Start with your doctor. Utilize the first visits after diagnosis to gather information directly from the physician who understands your child’s case best.
2. Recognize your child’s case is individual. Everything that you read about or research may not be applicable in your child’s case. What happens to another child may not happen to yours! Be aware, but do not dwell on every possible case scenario.
3. Determine what you don’t understand so that you can obtain credible information from your doctors and the JM community.
4. Research, but don’t get “lost down the rabbit hole” Limit research time online, and stick to primary sources (like PubMed, MedLine, the NIH, NAIMS, Cure JM) rather than exploring resources with questionable references.
Knowing what you are dealing with, learning about potential issues but not dwelling on the what ifs, and clarifying what you need to know (but don’t) can provide you with a solid foundation to begin meeting the challenges of living with JM head on!
Follow me: My blog or on Facebook.
CURE JM HERO AWARD
Dr. James Katz, Director
George Washington University (GWU) Myositis Center,
2008-2013
Being 4 should be fun. So should being 5, and 6, and 7...but Katherine Alderfer has a medical file that's more than 8 inches thick. That's because at age 3, she was diagnosed with juvenile dermatomyositis (JDM).
Today, Katherine is doing better. She's benefitted not only from the loving care of her parents, but also from that of her twin sister Caroline who has been there for every single infusion and is her sister's biggest cheerleader. Caroline has also endured a lot of poking and prodding as she has participated in two separate "Twin Studies" being conducted to try to better understand JM.
Katherine is no longer taking steroid prednisone which she endured for years, and she's able to go a little bit longer between intravenous immunoglobulin infusions (IVIG), but she still faces many challenges and is not cured because, of course, there is no cure for JM.
In 2012, the Alderfer family was honored as a Cure JM Hero at the Annual Cure JM Conference. They were recognized for the compassionate way they have raised awareness and funds for the Cure JM Foundation.
"It's important to raise money for Cure JM," says Kristine, Katherine's mother, "because JM is an 'orphan disease.'" Being an orphan disease means that so few children are affected that pharmaceutical companies have no financial incentive to invest in prevention, treatment, or a cure. The Cure JM Foundation is the largest private funder of research to prevent or cure JM. Without the Cure JM Foundation, little progress would be made on research for a cure - and being 4 should be fun. Children like Katherine should be out playing soccer and not enduring steroids or in hospitals undergoing hours of infusions.
To raise funds for Cure JM this year, the Alderfers will once again sponsor their Christmas Shop for Cure JM. The annual event is at Sacred Heart School in Warsaw, IN, on November 2nd from 9:00 a.m. - 2:00 p.m. and will feature several vendors who have all agreed to donate a portion of their proceeds to Cure JM. It's a great opportunity to start your holiday shopping while at the same time, helping to fund a cure for JM. The event which will be broadcast live by a local radio station features a Kids Zone to allow children to play while moms and dads shop for a cure. For more information about the Shop for a Cure event, contact Kristine Alderfer.
The 4th Annual Eagles for Eleni golf tournament was another sell-out success! 120 golfers turned out to play in Sugar Grove, IL on August 25th, a day with perfect weather. As is part of the tournament tradition, guest of honor, Eleni, teed off, driving the ball 100 yards, straight down the fairway, to begin the play. The tournament featured wonderful raffle prizes and on-course contests, many contributed by sponsors and local businesses, including a 50" inch LCD, as the grand prize, and an Apple IPAD, Bears tickets, Drills, Restaurant Gift Certificates, Hand Tools, Cubs and White Sox Tickets, golf clubs, watches, and sunglasses, and an opportunity to win a car.
Toolkit Online |
The event was followed by a ribeye steak dinner at which Cure JM Foundation Board Member, Patti Lawler spoke to the crowd, thanking them for their support. She shared with them about the research that donations to Cure JM helps to fund.
Participants look forward to the event from year to year and this year's group ended the event with the chant "one more year, one more year." The $11,000 raised this year brings the event's 4-year total to more than $58,000.
Study Documents Family Toll of JM
*The following study was presented by Samantha Kountz-Edwards M.S., Michael Schmidt M.S., Natasha Quinn, Maxwell Rappoport, Wendy Packman, J.D., Ph.D., at the American Psychological Annual Convention in Honolulu Hawaii held July31st- August 4th, 2013 based on research conducted about Cure JM families recruited at the 2012 Cure JM Annual Conference*
Juvenile Dermatomyositis (JDM) is a rare autoimmune disease that affects roughly two to five child
Unfortunately, very little psychological research has been conducted to evaluate the impact of JDM on families. In order to best support families and children affected by JDM, research should be conducted to assess the family impact of JDM, the level of distress consequently experienced by the child’s caregiver, and the most common or helpful sources of coping (i.e. religion, friends, family, etc.). This study seeks to identify the quality of life of children with JDM and the psychosocial family impact of JDM.
Participants were recruited from the 2012 CureJM conference along with multiple online support groups worldwide.
This research study suggests that JM patients and families may be more influenced by the emotional and social impact of JM rather than the physical effects of the disease itself. This study supports the need for organizations with strong family support networks, such as the Cure JM Foundation, who can play a role in improving the overall quality of life for both the child with JDM and his/her family.
Read more about this study's findings on the Cure JM website.
Aoede, who has dermatomyositis, will be featuring JM families in a video for her song “Perfect Day.” If you would like to participate, send 2-3 photos or a 30 sec video (or both) of YOUR PERFECT DAY! For example, photos of you at the beach, at the park, at home baking cookies, watching a sunset, sitting under the stars, painting, playing music, anything! Maybe a perfect day is one where you just feel good enough to get outside or your hospital room has a window with a view. Everyone has a different idea of what a perfect day might be!
If you like to color, draw or paint, Aoede is also searching for original artwork to symbolize “Perfect Day.” The winner will have their artwork featured on the album and will receive a signed CD of Aoede’s children's musical story “Is Love A Fairy Tale?”
The contest has been extended through October – but submit your entries now to have the best chance to be chosen!
Check out all of the details at www.curejm.org/songs
Announcing the New Legacy Club
The Cure JM Foundation is excited to announce a new Legacy Club to recognize those that have made a Planned Gift. To learn more about planned giving opportunities, visit the Cure JM website.
All charter members of the new Legacy Society will be recognized in several special ways:
- An invitation to a Legacy Club event at the Annual Conference with the Board of Directors
- Recognition in the Annual Conference program and at the awards dinner
- Recognition in the newsletter and on the website
- A keepsake Legacy Club Award
- A thank you card from a child battling Juvenile Myositis
Join today at www.curejm.org/future - your gift could unlock the cure!
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