Board of Directors
Rhonda McKeever, Chairman
Denise Doria, CFO
Patti Lawler, Secretary
Ragan Cantrelle,
Lake Carpenter
Family Outreach
Mitali & Rishi Dave, Strategic Planning
Jacque DenUyl, Young Adults / Networking
Shari & Tom Hume, Fundraising / PR / Communications
Annie Mitchell, Social Media / Patient Advocacy |
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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
Amy Gleason
Julie Wohrley
Fundraising
Julie Shevlin
Jennifer Smith
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
Cure JM Thanks You for a Great 2011
As the holiday season approaches, our all-volunteer team at the Cure JM Foundation is closing out a year of hard work that has led to important advances in the diagnosis, treatment and possible cure of Juvenile Myositis (JM). This progress would not have been possible without the help and support of generous friends like you, and for that, you have our sincere thanks. You have enabled Cure JM to make significant strides in 2011 in terms of research, increased awareness and family support.
Some of the highlights from 2011 include:
- Extending research grants for the Cure JM Program of Excellence in JM Research at Chicago Children’s Memorial Research Center and the Myositis Research and Treatment Center at George Washington University.
- Research progress in genetic mapping, funded by Cure JM support,in identifying genes that may predispose to children to JM was presented by medical experts.
- Providing funding support to evaluate treatment protocols for patients with moderate to severe juvenile dermatomyositis. Cure JM is collaborating with Childhood Arthritis and Rheumatology Research Alliance (CARRA) and the Duke Clinical Research Institute (DCRI) in this exciting collaboration.
- Establishing a Medical Advisory Committee consisting of the three leading experts in JM research and treatment: Dr. Lauren Pachman of Chicago Children’s Memorial Hospital; Dr. Lisa Rider of the NIH; and Dr. Ann Reed from the Mayo Clinic.
- Winning “Top Rated Charity” award from the Great Nonprofits Organization. (See related story below.)
- Growing our Family Support Network by adding eight regional representatives to connect with new patient registrants and immediately send out a Welcome Packet.
- Holding our largest Cure JM Medical Conference and Fundraiser in Seattle. For the first time, Cure JM collaborated with Seattle Children's Hospital by hosting a medical conference for the medical community -- over 100 medical professionals attended the Grand Rounds and nearly 50 medical professionals attended the all-day JM educational program. The family events were attended by approximately 50 JM families and over 100 runners who raised nearly $200,000.
- Developing new literature including a brochure in Spanish, a welcome kit and a fundraising toolkit.
- Increasing awareness across the U.S. with over 25 newspaper articles or TV news stories.
- Winning “Top Rated Charity” award from the Great Nonprofits Organization. (see related story below)
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Consider an End of Year Donation
These are important achievements and we thank you for your part in making them possible. However, our focus must remain on the future and ensuring it’s a bright one for the courageous children battling JM. We will do our part in continuing the much-needed medical research that will one day lead to a cure. We will also continue to provide support services to educate and support those families affected by JM. However, we can’t do it without you. Your tax-deductible, year-end donation will help ensure all of this work can move forward. By working together, we can, and will, find better treatments and ultimately the cure for JM. What better gift is there than giving hope for a cure to the special child in your life with JM? Donate now.
(Check with your company to see if they match donations.)
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Cure JM is a Top-Rated Charity for 2011
Thanks to 5-star reviews from Cure JM families and friends, the Great Nonprofits website named us a Top-Rated Charity for 2011.
Below are just a few excerpts from our reviews:
“From the moment I made contact with Cure JM, they have made us feel like family members and have been with us every step of the way. No concern is too big or too small. Anytime I've had a question, someone has always been there to help.” Shari S.
“Had it not been for CureJM, I would not have had the crucial information and support to get me through 3 tough, long years. My daughter takes 32 pills a day, has weekly chemo injections, and 10 hour infusions every 3 weeks. I hate this disease, but I am grateful every day that a group of dedicated parents took the time and effort to create CureJM, making resources available from diagnosis to -- God willing -- remission.” Kelly G.
“The strides these parents have made is no less than astounding, with serious contributions made to capital campaigns for serious research, networking between the affected children and parents, and providing a knowledge base that rivals some of the more well documented and supported chronic diseases. As a parent with a child who had a related illness, I have also benefited from this knowledge base, as many of the drugs and "tips" are the same. As a volunteer organization, it is well managed, and a labor of love, not burdened by ad campaigns or employee salaries. Your contribution makes a real impact on an underfunded, under-recognized, serious childhood disease here where it is needed most. As an "orphan" disease it receives little to no funding from government or healthcare sources. Supporting Cure JM can really make an enormous impact, and for that reason, we are donors and supporters.” Kim M.
To read more of our five-star reviews or provide your own review, click here: http://greatnonprofits.org/reviews/cure-jm-foundation/ |
Cure JM's mission is to provide support for families
coping with JM, raise awareness of JM, and fund research that will ultimately lead to a cure.
www.curejm.org |
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