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SURVEY RESULTS: WHAT RESEARCH PRIORITIES MATTER MOST TO JM FAMILIES?
Over the last year, Cure JM families have been participating in an important effort to help determine what research matters most to Cure JM Families. Through a CARRA-funded fellowship, Dr. Colleen Correll of the University of Minnesota, lead this project for PARTNERS (a patient-powered pediatric rheumatology research network that consists of patient families, Cure JM, the CARRA network, the Lupus Foundation of America, the Arthritis Foundation, and a quality improvement network called PR-COIN). Dr. Correll collected parent and patient input through a series of surveys and a Parent Focus Group at Cure JM's Annual Family Conference in February 2017.
Through these efforts, Dr. Correll identified 20 research themes of interest to Cure JM families. In May, over 300 parents, patients, and caregivers helped prioritize these research themes.
Through these surveys, Cure JM families reported that their top three research priorities are:
- A Cure
- New Treatments with Fewer Side Effects
- Predictors and Triggers for a Flare
“We are currently working on combining these patient and family perspectives on research priorities with the scientific community’s perspectives on research priorities to come up with a joint strategic research agenda for the next 3-5 years,” says Cure JM President Mitali Dave, Co-Chair of Cure JM's Research Committee.
“Cure JM remains laser-focused on our goal of advancing JM research faster by focusing on drug development and repurposing, understanding the biological mechanisms of JM, and understanding the genetic components of the disease,” adds Mitali.
Click here to learn more about the research Cure JM is funding.
SUZANNE EDISON, MA, MFA, APPOINTED TO CURE JM BOARD OF DIRECTORS
Cure JM is excited to announce that Suzanne Edison, MA, MFA, has been appointed to the Board of Directors.
Suzanne is currently co-Chair of Cure JM’s Research Committee, which works with families and Cure JM's Medical Advisory Board (MAB) to set Cure JM's research priorities and agenda.
Suzanne has been active in Cure JM for 10 years, since her daughter was diagnosed with JDM, the most common form of JM, in 2007. Suzanne has participated in dozens of fundraisers, including family-organized events, multiple Walk Strong to Cure JM™ walks, the annual Holiday Challenge, National Family Conference fundraising, and several fundraisers that she organized herself.
Suzanne has also served as the Director of the Family Support Network, the Family Support Representative for International Families, the President of the Pacific Northwest Chapter, and a member of the Leadership Council.
“As a parent, I know that the hope is in the research,” says Suzanne. “And as a parent, I am infinitely grateful to all the Cure JM families and supporters whose generosity make this much-needed research possible. I look forward to serving all of our families and patients on the Board of Directors.”
Learn more about Cure JM’s all-volunteer Board of Directors
Contact Suzanne
MYOSITIS AND YOU BOOK AVAILABLE
The book Myositis and You is available from Amazon in both hard copy and eBook. Funded in part by Cure JM, the comprehensive guide features over 450 pages with contributions from over 80 experts and medical professionals.
Learn More or Purchase a Copy Today
DID YOU KNOW? SOME ENVIRONMENTAL FACTORS MAY CONTRIBUTE TO JDM
It is believed that JDM develops due to a combination of genetic predispositions and environmental "triggers." Dr. Lisa Rider and Dr. Frederick Miller have completed an extensive review of literature about the environmental triggers that may play a role in the onset of JDM. They have also conducted their own research.
“Infection and short-term exposure to ultra-violet radiation prior to diagnosis are emerging risk factors for subgroups of patients with JDM,” says Dr. Lisa Rider.
“Stress has also been identified as a risk factor for other pediatric autoimmune conditions. All of these factors will continue to be studied further.”
It is believed that seasonal environmental factors may also be involved in the development of JM. In studies of juvenile myositis patients, some subgroups of patients had seasonal birth distributions, meaning that more patients were born in certain times of the year. Hispanic patients with JM had a peak birth seasonality in mid-October. Anti-p155/140 autoantibody negative JDM patients had a peak birth seasonality in July. These findings will continue to be studied.
Additionally, one report showed an increased risk with maternal occupational exposure to chalk dust or gasoline vapor and maternal smoking during pregnancy.
Learn More: Read a recent article published in The Rheumatologist magazine, authored by By Lisa G. Rider, MD, & Frederick W. Miller, MD, PhD
UPCOMING
WALK STRONG TO CURE JM™ EVENTS
Cure JM is excited to announce more Walk strong to Cure JM™ family fundraising walks. Come out and join us at a walk near you! Each walk will feature fun, entertainment, food, and a family-friendly fundraising walk. Forward this invitation to your friends & family in the area of a walk.
To learn more or register for a walk contact your local walk leader or lauren.alvord@curejm.org.
- SEATTLE, WA - Saturday, October 7, 2017
Marymoor Park, Redmond, WA
Contact julie.shevlin@curejm.org or CLICK HERE TO SIGN UP
- ORLANDO, FL - Saturday, October 7, 2017
Bill Frederick Park at Turkey Lake, Orlando, FL
Contact denise.rackauskas@curejm.org or CLICK HERE TO SIGN UP
- WORCESTER, MASSACHUSETTS - Sunday, October 15, 2017
Contact melissa.corey@curejm.org or CLICK HERE TO SIGN UP
- DALLAS/FORT WORTH, TX - Saturday, November 11, 2017
River Legacy Park, Arlington, TX
Contact jennifer.howard@curejm.org or CLICK HERE TO SIGN UP
- HOUSTON, TX - Saturday, January 13, 2018
Rob Fleming Park, The Woodlands, TX
Contact melissa.shelby@curejm.org or CLICK HERE TO SIGN UP
- CENTRAL TEXAS- Spring, 2018
Contact april.duley@curejm.org
- CHICAGO - May, 2018
Contact jennifer.coe@curejm.org
- NEW YORK - September, 2018
Contact tracy.vanness@curejm.org
UPCOMING EVENTS
Join fellow Cure JM families and supporters at an upcoming event near you. View the complete list of events here.
- Crossfit for Cure JM - Saturday, July 15, Williamsville, NY
Contact colleengrant1@hotmail.com.
- Philadelphia Family Social Event - Saturday, July 15, Wayne, PA
Contact kate.ettingoff@curejm.org.
- Fifth Annual Texas Mini Conference - Saturday, July 22, Martindale, TX
Contact sissy.taylor@curejm.org
- Evening Under The Stars - Saturday, August 5, Warsaw, IN
Contact kristine.alderfer@curejm.org
- Cure JM Yard Sale - Friday - Sunday, September 8-10, Lake Stevens, WA
Contact julie.shevlin@curejm.org
- Christmas Shop for Cure JM - Saturday, November 4, Warsaw, IN
Contact kristine.alderfer@curejm.org or visit our Facebook page
Do you have a story or photo you would like to share in a future edition of the ENews? Please send to darlene.fritsch@curejm.org
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