Board of Directors
Rhonda McKeever, Chairman
Denise Doria, CFO
Patti Lawler, Secretary
Ragan Cantrelle, Family Outreach
Mitali & Rishi Dave, Strategic Planning
Jacque DenUyl, Young Adults / Networking
Shari & Tom Hume, Fundraising / PR / Communications
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Advisory Council
Family Outreach
Kalee Carpenter
Casey Dean
Suzanne Edison
Jill Szysko
Young Adult Outreach
Myah Stuemke
Amy Maier
Chyllia Dixon
Medical Collaboration
Julie Wohrley
Social Media
Annie Mitchell
Fundraising
Lisa Forgas
Robert Slater
Damon Smedley
Grant Writing
Kelly Gaither
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Family Support Network
Director
Suzanne Edison
Regional Representatives
Sue Carpenter
(WA, OR, ID, NV, and CA)
Kalee Carpenter
(TX, OK, NM, AZ)
Ragan Cantrelle
(LA, MS, AR, TN, KY)
Suzanne Edison
(International)
Shari Shobe
(FL, GA, SC, NC, AL)
Michelle Shewbridge (ME, VT, NH, MA, RI, CT, NJ, DE, MD, DC, NY, VA)
Jill Szyszko
(MI, IL, IN, OH, PA, WV)
Jill Mickelson
(WI, MN, IA, NE, KS, MO)
Anke Smith
(MT, ND, SD, WY, UT, CO)
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FEATURED STORY
Dr. Lisa Rider Honored as 2011
Physician Researcher of the Year
Dr. Lisa Rider, Physician Researcher of the Year
We are thrilled to announce on June 21st, Dr. Lisa Rider, a long standing Cure JM partner at the National Institutes of Health (NIH), was awarded the 2011 Physician Researcher of the Year. She was selected for this honor by the Physicians Professional Advisory Committee (PPAC) out of the 900 medical officers in the US Public Health Service (USPHS).
Her plaque reads: "[This award is] presented in recognition of her noteworthy basic and clinical research into juvenile dermatomyositis. Her leadership in epidemiologic and clinical studies has contributed substantially to public health practice. Her career achievements are in the highest tradition of the United States Public Health Service."
Congratulations, Dr. Rider!
For more details on Dr. Rider's acheivements, please visit: http://www.niehs.nih.gov/news/newsletter/2011/july/spotlight-rider/index.cfm
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Dr. Rider’s Studies Open for Recruitment
Environmental Flare Survey - Cure JM Sponsored Study
GWU researchers are conducting research on environmental exposures in adult and juvenile dermatomyositis (DM) and polymyositis (PM) patients, to determine whether these exposures contributed to a disease flare.
The study is an anonymous online survey available at:
http://www.surveymonkey.com/s/environmentalexposureandflare
To be eligible to take the survey, you:
• Need to reside is US or Canada
• Have adult or juvenile DM or PM (or are parents of patient)
• Are at least 1 year from diagnosis
• Are 2-85 years of age
Online survey takes approximately 10-15 minutes.
For more information, please contact study investigators:
James D. Katz at 202.741.2488 or jkatz@mfa.gwu.edu
Gulnara Mamyrova at 202.741.3069 or gmamyrova@mfa.gwu.edu
Twin/Sib Study
The Environmental Autoimmunity Group of the National Institutes of Environmental Health Sciences is currently enrolling families – in which an adult or child meets criteria for Myositis – and in which a twin or sibling of the same gender, who is within 4 years of age, does not have Myositis or any other autoimmune disease. Patients remain under the care of their personal physicians while participating in the study. Compensation is available. There is no charge for study-related evaluations and medical tests at the NIH.
The goal of the study is to understand the genetic and environmental factors that may result in systemic rheumatic diseases.
The study will perform evaluations to assess why one twin or sibling developed disease and why the other brother or sister did not.
Subjects must be diagnosed within 4 years and may enroll at the NIH Clinical Center in Bethesda, Maryland or their local doctor’s offices.
Medical records, questionnaires and blood and urine samples will be collected at enrollment.
The development of new autoimmune disease during the study will be tracked.
For further information about the study, contact:
Dr. Lisa Rider: (301) 451-6272 or email: riderl@mail.nih.gov
Dr. Irene Whitt: (301) 451-6270 or email: whittiz@mail.nih.gov
Main Office: (301) 451-6280 or (888) 271-3207
Or visit: http://www.niehs.nih.gov/research/clinical/join/bethesda/participants/studies/psftsdsrd/index.cfm
Identifying Risks for Myositis/MYORISK Study
Doctors at the NIH are conducting pioneering research in understanding the environmental risk factors that may result in myositis. The goal of this study is to determine if certain infectious or noninfectious agents are associated with myositis and the anti-synthetase autoantibody group. The study consists of completing surveys, collecting a house dust sample, a single clinic visit, and a blood draw. There is no charge for evaluations and medical tests at the NIH. Compensation is provided for both participants and their referring physician.
You may qualify if:
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You have been diagnosed with adult or juvenile polymyositis or dermatomyositis
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You were diagnosed within the last year
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You are a healthy friend or cousin of a patient with polymyositis or dermatomyositis
Both children and adults are eligible.
You may be enrolled at the NIH Clinical Center in Bethesda, Maryland, or at the NIEHS Clinical Research Unit, Research Triangle Park, NC, or in your local doctor’s office.
Call 800-411-1222
TTY 866-411-1010
Or visit:
http://www.niehs.nih.gov/research/clinical/join/bethesda/participants/studies/erftas/index.cfm
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Cure JM Funds Collaborative Research on
JDM Treatment Protocols
by Patti Lawler, Cure JM Secretary
  
Cure JM is pleased to announce that it is providing funding support to evaluate treatment protocols for patients with moderate to severe juvenile dermatomyositis. Cure JM will partner with CARRA (Childhood Arthritis and Rheumatology Research Alliance) and the Duke Clinical Research Institute (DCRI) in this exciting collaborative endeavor.
As we all know, the treatment of JDM remains a challenge even for clinicians who frequently manage patients with this disorder. An important approach to identify optimal treatment is the creation of a registry of JDM patients treated with current practices and standardized best care protocols (as proposed by the CARRA JDM group). This registry would systematically record and track patient treatment and outcomes, so that the treatment effects and safety signals could be detected.
With Cure JM’s funding support, CARRA in conjunction with DCRI, will be better able to 1) capture the data from this research study through the expansion of the CARRAnet data system as well as 2) provide the necessary resources for JM treatment sites in the United States and Canada.
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Officially Off All Meds!
by Suzanne Edison, Family Support Network Coordinator
Suzanne Edison with daughter Flora
It's official. Flora is off all meds. Labs, muscles, skin all look great. I hope our story gives hope. I so desperately needed to know that kids did get through it when we first started in spring 2005.
Believe me there were dark days when I worried about everything. I felt inadequate, angry, and helpless. I know you know what I'm talking about. We all have them. But we get through…with humor or faith, running marathons, or simply one foot in front of the other…because we have to.
And then there are those moments of brightness. A smile from our child, an hour where they aren't in pain, an IV started the first time vs. the 4th time, an astute remark or observation they make, a hug or kiss they give, or whatever it is that makes us realize that to LOVE is what we are here for. We need to celebrate them - each of them. And, at the risk of sounding like the infinitely broken record that I am, each of us as caretakers needs to have moments to care for ourselves. We can't do it all alone. We do need others. Please, please do this for yourself, AND do it because you will be a better caretaker for your child, too.
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Cure Kids Jam and Festival Raises $93,000
by Shari Hume, Cure JM Board Member
Damon Smedley with son Mason
It was a day of music and fun in Hillsboro, Oregon where over 1,000 people attended the 3rd Annual Cure Kids Jam and Festival on August 6th. The day included live performances from American Idol finalists Kimberly Locke and Blake Lewis, along with rising stars Jessica Lerner and Shelby Marie. The concert also featured the Graves Brothers, a band with a special place in their hearts for Cure JM. One of the band members is Chris Graves, who battled a severe case of JM as a child, but is now in remission. See the Graves Brothers share their thoughts on their Cure Kids Jam experience here: http://www.youtube.com/watch?v=6A0tacKfnuc.
The real stars of the event were the children courageously fighting Juvenile Myositis. Five local children with JM attended the concert and had their time in the spotlight as well. These inspirational kids stepped onto the stage and received a well-deserved standing ovation.
All attendees at the event enjoyed fun activities, including bounce houses, balloon artists, face painting and even a human hamster ball. Damon Smedley is the organizer of this fabulous event; and he is also the dad of Mason, a young boy with JM who touches the hearts of everyone he meets.
This event requires an army of volunteers, and it’s heartwarming to see the entire community come together to make this event such a big success. This year, Damon and his team raised $93,000 at the concert and the dinner/auction the night before!! Damon said he is “always amazed at the number of volunteers and the hours each of them are willing to give, as well as the money/in-kind donations from local sponsors that make the event such an amazing success.”
Damon will be holding this event again in the summer of 2012, and hopes to see even more Cure JM families joining in on the fun.
See local media coverage here: http://www.kptv.com/video?autoStart=true&topVideoCatNo=default&clipId=6130664
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Small Town Texas Auction Raises $33,000
by Jen Weers
Lindsay Cleveland with daughter Janey
For her entire life, Lindsay Cleveland has been counted among the 5,600 residents of Rockdale, Texas, located 60 miles northwest of Austin. The pride this fourth-generation resident feels toward her town is palpable.
Never, though, in nearly 30 years, had Lindsay felt such reverence for her community as on April 15, 2011. On that spring evening, family, friends, neighbors, and strangers gathered late into the night to support Lindsay’s family, as well as Cure JM. Lindsay’s daughter, Janey, six, has JM.
Lindsay’s event, The Fight Against Juvenile Myositis, was held at Rockdale’s The Ranch.
Before the event, Lindsay’s family pre-sold raffle tickets, collected silent and live auction items, and gathered donations. By the time the prep work finished and the event was ready to begin, Lindsay knew the event would be a success, but her surprise at the results overwhelmed her: An astonishing $33,000 was raised by this small yet supportive community.
“I have never in all my life been touched by so many unselfish and giving people,” Lindsay said. “This event will forever be dear to my heart and my family’s as well.”
Lindsay took advantage of the event to raise awareness as well as dollars. “During the event I asked JM families and doctors to speak and share their experiences and stories. I also spoke and shared videos of Janey along with other videos of children with JM. We also created a wall with pictures of children with JM, along with a short biography about their journey.”
“Rockdale may be a very small community, but so many generous, caring, loving individuals live here,” Lindsay said.
Lindsay’s event showcased the kindness in people. Rockdale may be a remarkable place to live, but chances are just as many generous, caring, loving individuals surround you as well.
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Interested in Holding Your Own Fundraiser?
Cure JM Foundation’s ability to increase JM awareness, to provide family support and fund research to find a cure depends upon fundraising by you – the members of the JM community. Our goal for 2011 is to raise more than $1 million dollars. This would be the most money Cure JM has raised in a year in its 8-year existence. Please consider helping us. For ideas and advice, please check out our new Fundraising Toolkit.
If you have another fundraising idea you would like to discuss, contact Cure JM at info@curejm.com or (760) 487-1079
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