Cure JM Foundation Newsletter
Fred, United States Army, pictured with his two daughters.
Cure JM is excited to announce our new participation in the Combined Federal Campaign (CFC).
Cure JM's CFC number is 94746.
Employees of the United States federal government can support Cure JM through the workplace giving campaign known as the Combined Federal Campaign (CFC).
Many CFC campaigns begin in the fall. During their group's CFC campaign, federal employees will have the opportunity to designate an organization to benefit from their employee contributions. The CFC includes all federal employees, including civilian employees, military personnel and postal workers.
Help spread the word! Forward this message to your friends and family and let them know that Cure JM's CFC number is 94746.
Download a flyer and learn more at www.curejm.org/cfc
We're standing by to help at info@curejm.org or (760) 487-1079.
Volunteers are urgently needed for Juvenile Myositis research studies.
Volunteers are urgently needed for Juvenile Myositis research studies.
With the rarity of Juvenile Myositis, your participation is crucial for keeping research moving forward.
- URGENTLY NEEDED: MYORISK Study conducted at the National Institutes of Health (NIH) in Bethesda, MD. Please call or email SOON as enrollment closes in Spring 2016. You may be enrolled at your local doctor's office or a number of locations around the United States. Currently enrolling patients who were diagnosed in the last two years. Doctors at the NIH are conducting pioneering research into the environmental risk factors that could lead to myositis. Please email Deona Cooper, the Study Coordinator, at Deona.Cooper@nih.gov or call 301-451-7667.
- URGENTLY NEEDED: Microbiome Study conducted at Seattle Children's Hospital, Seattle, WA. Patients can participate from their home physician's office, no travel is necessary. Currently enrolling children with JDM who are less than 14 years old. Study participants must enroll either before any treatment has started or be off of immunosuppression for 3+ months and beginning to flare. Please call (206) 987-2057.
- URGENTLY NEEDED: Pediatric identical twins. Sets of twins are needed where one twin has Juvenile Dermatomyositis (JDM) and the other twin does not. For further information please call (312) 227-6277. Study conducted at the Cure JM Program of Excellence in JM Research at Stanley Manne Children's Research Institute, affiliated with Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL.
- Join the Cure JM Patient Registry. This information is collected online and will be used by researchers as part of a demographic survey to determine if there are clusters of children affected by Juvenile Myositis (JM) in the same geographic area. Click here to join.
- Pilot Calcinosis Study conducted at George Washington University, Washington, D.C. This is a study for treating calcinosis (calcium deposits in the skin) in individuals with Adult or Juvenile Dermatomyositis who have not responded to other treatments. Participants must be between the ages of 18-65 years, have stable disease which is mildly active or in remission, and have failed at least one therapy for superficial calcinosis. Please call (800) 411-1222.
- Twin/Sibling Study conducted by the National Institute of Environmental Health Sciences (NIEHS) in Bethesda, MD. You may enroll at your local doctor's office, Bethesda, MD or in Research Triangle Park, NC. This is a study for families with siblings or twins in which one sibling has developed an autoimmune disease and the other has not. Now enrolling patients within 5 years of diagnosis. Siblings need to be of the same gender, within 5 years of age and without an autoimmune disease. There is no charge for study-related evaluations. Please call (800) 411-1222.
- Study of Premature Atherosclerosis in Juvenile Dermatomyositis conducted at the Children's Hospital at Montefiore, Bronx, NY. Currently enrolling patients age 2-21 with a diagnosis of JDM. To be eligible patients cannot be currently using medications that alter lipid metabolism or endothelial function (including lipid lowering agents), be a smoker or have another chronic illness (other than JDM). Please call (718) 696-2405.
Click here for a complete list of research studies needing volunteers.
In the first year of research, researchers found some preliminary evidence that a genetic region is controlling expression of a protein involved in immune responses. In the second year of research, they will seek to confirm this result using a larger set of samples.
Cure JM is funding a research study at Stanford University utilizing previously collected blood samples to look at certain genes and potentially determine their role in the development of calcinosis.
Calcinosis is an extremely challenging manifestation of JDM for those who experience it. The available treatments are not as effective as doctors and families would like. But researchers believe a better understanding of the underlying process in the body can be one path to better therapies.
Results of a genetic screen carried out by a group of pediatric rheumatologists, (Myogen led by Drs. Fred Miller, Lisa Rider and Peter Gregersen) indicated that there might be a genetic risk factor influencing which children get calcinosis.
The first step in looking further into this possibility is to understand more about what this particular genetic region does. Cure JM is funding research at Dr. Betsy Mellins' laboratory at Stanford University School of Medicine to investigate this by looking for the effect of a specific genetic region on immune cells.
In the first year of this study, researchers found some preliminary evidence that this specific genetic region on immune cells is controlling expression of a protein involved in immune responses. This could be a path to better understanding calcinosis.
In the second year of research, they will seek to confirm this result using a larger set of samples.
"Thank you to the JM community who made this research possible," says Cure JM V.P. of Research Amy Gleason. "We hope that a better understanding of the causes will ultimately lead to better treatments and better outcomes for patients."
Susan Kim, M.D., has joined the Cure JM Medical Advisory Committee. Dr. Kim is a Pediatric Rheumatologist and Assistant in Medicine at Boston Children's Hospital, Harvard University in Boston, MA.
Adam Huber, M.D., has joined the Cure JM Medical Advisory Committee. Dr. Huber is a Pediatric Rheumatologist and Professor of Pediatrics at the IWK Health Centre and Dalhousie University in Halifax, Nova Scotia, Canada.
Cure JM is excited to announce that Dr. Adam Huber and Dr. Susan Kim have joined the Cure JM Medical Advisory Committee.
The Cure JM Medical Advisory Committee plays an important role in fulfilling Cure JM's mission to advance Juvenile Myositis research.
The members of the Cure JM Medical Advisory Committee are:
- Ann Reed, M.D. Chair of the Department of Pediatrics, Duke University School of Medicine
- Lauren Pachman, M.D., Professor of Pediatrics, Northwestern University Feinberg School of Medicine
- Lisa Rider, M.D., Deputy Chief of the Environmental Autoimmunity Group, National Institute of Environmental Health Sciences, National Institutes of Health
- Adam Huber, M.D., Pediatric Rheumatologist and Professor of Pediatrics at the IWK Health Centre and Dalhousie University in Halifax, Nova Scotia, Canada
- Susan Kim, M.D., Pediatric Rheumatologist and Assistant in Medicine at Boston Children's Hospital, Harvard University
Join over 50 families at the Cure JM National Conference at the Sirata Beach Resort in St. Pete Beach, FL, January 15-17, 2016.
Teens, Tweens and Young Adults will connect with each other in the Teen Cyber Lounge, hands-on Photography Workshop, a physician-led workshop on Transitioning to Adult Care and a special sessions just for Teens and Young Adults.
In the General Session, prominent JM researchers and physicians will answer your questions and give an update on the latest in JM research and treatment options.
Kids age 3-10 will make new friends and enjoy a fun day at the supervised Kids' Fun Camp. This year's camp will feature a fun Star Wars theme!
Register now for the Cure JM National Conference and Fundraiser
The Cure JM National Educational Conference and Fundraising Event will be in St. Pete Beach, Florida, January 15-17, 2016 at the Sirata Beach Resort.
Join over 50 other Cure JM families for an unforgettable weekend at the 9th National Conference. The conference is Cure JM's biggest event and fundraiser of the year.
Some highlights will be:
- A Special Session for Newly Diagnosed Families
- Small group educational sessions about real life issues facing JM patients, families and caregivers, including sessions on Nutrition, School Resources and Improving Quality of JM Care (facilitated by CARRA Researchers)
- A General Session for all participants, where prominent JM researchers and physicians will answer your questions and give an update on the latest in JM research
- Special sessions for dads, moms and grandparents who care for children with JM
- Sessions for Teens, Tweens and Young Adults including a workshop on transitioning from pediatric to adult care and social time to make new friends
- A Kids' Fun Camp where patients and siblings will enjoy activities, have fun and form lasting friendships with kids just like them; this year's Kids Fun Camp has a Star Wars theme
- The Walgreens St. Pete Beach Classic, where Cure JM runners, walkers and volunteers will help raise funds for JM research. This is Cure JM's single largest annual fundraiser. We need YOUR help to make it a success so we can keep funding critical research for our kids. This is a high point of the weekend!
Learn more here or contact us at info@curejm.org or (780) 487-1079.
Jessie completed her High School tennis career ranked 5th on her team and earned a varsity letter. "Jessie has excelled beyond all of our wildest dreams," says her mom Jennifer.
written by Jennifer Lappin, proud mom to Jessie
It's amazing how your perspective changes as a mom with a child that has a potentially life-threatening disease.
I was listening to another mom talk about her number onr ranked tennis player at our local high school. She complained how her daughter should be playing better, as she had played tougher opponents in another tennis program. She felt her daughter should be demolishing all of her opponents easily.
I just sat back listening and thinking...thinking on how grateful I am that my daughter can swing a racket, let alone play the game of tennis. And how grateful I am that she is able to be out with friends and playing just like the other kids.
We are so grateful that Jessie is not only playing, but was ranked 5th on her team and earned a varsity letter, excelling beyond all of our wildest dreams. Her ability to step toe-to-toe with some of the toughest opponents seems unreal.
Then to continue to win with a 9-1 record, even after 6 months of IVIG/solumedrol and still taking high doses of methotrexate and plaquenil just makes me want to sink to my knees in joy, sobbing over what she is overcoming.
Perspectives change.
We are grateful for things that other people give no thought to -- we are grateful when our daughter can just be normal.
And we are so grateful for things we never imagined would be a part of our lives: our physicians and the endlessly supportive families we have met through Cure JM.
Yes, perspectives change. Sometimes for the better.
To connect with other Cure JM families like Jennifer has, visit the message board at www.curejm.org/chat.
Dr. Ann Reed. Chair of the Department of Pediatrics, Duke University School of Medicine and member of the Cure JM Medical Advisory Committee.
Rheumatologists and JM researchers are answering your questions. Questions can be submitted to info@curejm.org.
Parent Question: What are the genetic odds that my other children will also get Juvenile Myositis or some other related autoimmune disease?
Answer: Provided by Dr. Ann Reed, chair of the Department of Pediatrics, Duke University School of Medicine
JDM is reported to occur at a mean age of 6.7 years, and the incidence is 3.2 children per million children each year1. There have been rare reports of siblings both with JDM. Studies to look at other autoimmune disorders in the JDM children do show that concomitant (or associated) autoimmune disease, such as Celiac disease, may be seen at a low level.2
Also, association of other family members (siblings, parents, cousins etc.) with autoimmunity does show an increase over the general population for other autoimmune disease including Type 1 diabetes, and lupus, especially in second and third degree (or generation) relatives.
It has been long thought that one of the unifying reasons for family aggregation of autoimmune diseases, such as JDM, was because of the HLA genetic similarities. HLA genes are a group of immune response genes inherited in families and certain subtypes are more often seen in autoimmune diseases such as JDM, Celiac disease, lupus etc.
1Mendez EP,
2Lipton R,
4th Annual Yard Sale for a Cure
Friday, September 11 through Sunday September 13
Lake Stevens, WA
Dinner and Auction to Benefit Cure JM
Saturday, September 19
White Plains, NY
"Miles for Maddie" - a 5k to benefit Cure JM
Sunday, September 20
Fort Wayne, IN
Ironman to Benefit Cure JM
Sunday, October 11
Louisville, KY
4th Annual Shop for a Cure
Saturday, November 7
Warsaw, IN
Be Beep Toy Store Event to Benefit Cure JM
Saturday, November 14
Columbia, SC
Annual Turkey Trot to Benefit Cure JM
Thursday, November 26
Jasper, AL
Annual Holiday Benefit for Cure JM and Children's Hospital Los Angeles
Sunday, December 13
Hollywood, CA
Fashion Show to Benefit Cure JM
Thursday, January 6
Baton Rouge, LA
Rachel's Wish: An Evening to Benefit Cure JM
Saturday, February 6, 2016
Merrionette Park, IL
3rd Annual Cowboy Brad Concert to Benefit Cure JM
Saturday, June 25, 2016
Estes Park, CO
Provide support for families coping with Juvenile Myositis
Raise awareness of Juvenile Myositis
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