Past UpdatesSummer 2005 Update Dear Team JM Members, This is our Team JM summer update on new programs at Cure JM and information on fundraising and other opportunities. First of all, welcome to our many new members. With this energetic and determined group, we strongly believe our goal of raising $1 million for research this year is well within our reach. Team JM Leaders To guide this considerably large team, we recently established a Team JM Leader group of 12 incredible ladies that will lead our fundraising and awareness-raising efforts. This group consists of: Connie Radzwion and Beth Erickson (Co-Directors), Jill Mickelson (Bracelet Manager), Jen Weers (Bear Hugs Manager), Jennifer Kavanaugh, Lori Roszkowiak, Michelle Shewbridge, Stacy Rowley, Rebecca Schweikert, Cyndi LaMoure, Dot Marshall and Maryalice Hackney. You will soon be connected with one of these leaders to exchange ideas and potentially work together on events.
Cure JM Posters We now have Cure JM posters with pictures of many of the children suffering from JM. The poster can be downloaded from the website under the literature link or we can mail the large-sized posters to you which were professionally printed. Please take these to your pediatrician, rheumatologist, dermatologist, etc. and ask them to post it in their offices or waiting room. The posters are also a helpful fundraising tool. We still have plenty of brochures that you can distribute to family and friends (and strangers!), and also fliers that can be used for bracelet fundraisers. The fliers can also be downloaded from the website’s literature link and the bracelets can be ordered from the website. Fundraisers Aside from the many bracelet fundraising events happening across the nation, there are some other exciting events planned to benefit Cure JM. These include golf tournaments, candlelight walks and dinners/auctions. Some other grassroots events that have been successful fundraisers are community garage sales, bake sales, lemonade stands, sno-cone stands, jewelry sales and school and office collections. Email and letter-writing campaigns to friends and family have also been helpful in raising funds for research. Family Support Network The Family Support Network is growing quickly, and we still need regional and state representatives in some areas. If you have an interest in becoming a state or regional support representative, please contact Suzanne Printz at suzanne.printz@curejm.com. The next regional meetings are scheduled for August 13, 2005 in Pennsylvania and Texas. Pictures We have added lots of pictures to the website, including a new symptoms and medication side effects section. There are also many new photos of the children and adults affected by JM that have been posted. If you haven’t already, please submit a picture for the Faces of Cure JM section. Mikey Galvin Memorial Research Fund In memory of an amazing and special little boy who passed away recently from complications of JM, we have established the Mikey Galvin Memorial Research Fund. Donations to this fund go to Dr. Lauren Pachman’s research for JDM at Chicago’s Memorial Research Center in Chicago. Please click on the link above to learn more about Mikey. There is another link from Mikey’s page which is a memorial site set-up by his wonderful family. It is a beautiful tribute to a boy who has touched so many lives. Mikey will be with us forever in our hearts! JM Book Our chairman, Harriet Bollar, is still working closely with the world’s leading doctors to complete the first-ever book on JM. The book has been funded by special donations to Cure JM. Research Review Board We are also establishing a Research Review Board to map out our pathway to a cure for JM. This group will be composed of members of the JM community. This is a very important group within Cure JM, so if you have any interest in becoming part of it, please contact Harriet Bollar at harriet.bollar@curejm.com The Research Review Board will work closely with the medical community to identify viable research and those researchers who are most able and most interested in helping us find a cure. The close involvement of Cure JM and the JM community in funding and directing JM research will accelerate us on the road to a cure. Media We have many new articles posted under our News Stories link, so please check this out when you get a chance. There have also been several TV and radio segments featuring some of our children affected by JM. If you haven’t pursued this avenue of raising awareness, please consider it. Please feel free to contact me with any questions, and as I mentioned earlier, you will be connected with a Team JM Leader soon to help you in your efforts. If you have other suggestions as to how you want to be involved, let me know. We are open to your ideas! My warmest regards, Sincerely,
Spring 2005 Update To Team JM members, This is to provide an update on Cure JM and to provide suggestions on how you, as a Team JM member can help us continue with raising awareness and funding for research. Last year, the Cure JM Foundation raised enough money to fund two key research studies, one at the National Institutes of Health in Bethesda, MD, for the completion of the “Childhood Myositis Heterogeneity Study” and the other through Children’s Memorial Foundation in Chicago, for “Untreated Children with Juvenile Dermatomyositis: Impact of Serologic and Genetic Factors on Bone Mineral Density”, with Dr. Kelly Rouster-Stevens as research fellow. Dr. Rouster-Stevens’ bone density abstract has been selected for presentation by the 2005 European Workshop for Rheumatology Research (EWRR) in Scotland, and has also been selected for presentation at the Pediatric Academic Society meeting this year. Our chairman, Harriet Bollar, as a member of the JM Book Editing Committee and co-author, along with Drs. Lisa Rider, Lauren Pachman and Fred Miller is working to complete this first-ever comprehensive book about JM, which is scheduled to be published this year. Cure JM Foundation is providing financial support for the book. We have also developed a brochure for Cure JM, which can be downloaded from our website under Family Support Network, or I can send hard copies to you in the mail. We also have an awareness bracelet which is royal blue and says, “Cure JM”. The first shipment of bracelets have already been distributed, but we will have more in by the end of March. The bracelets and brochures are a great opportunity for fundraising and increasing awareness at your child’s school and within your community as well as in mailings to family and friends. So please let me know if you would be interested in using them in a fundraising event to benefit JDM research through Cure JM. Other ideas for fundraisers you might want to consider include charity dinners (which some restaurants will help you coordinate), auctions, benefit concerts, bake sales, community or neighborhood garage sales, walk-a-thons, spare change collections, etc. If any of these ideas interest you, we can help you organize it. Or, if you have other ideas, we would love to hear them! You can also help simply by spreading the word about Cure JM. This includes asking your doctors to post a brochure on their office bulletin board or stock them in a brochure holder. You could also post one in your own office, perhaps in the kitchen area where many people gather. Additionally, consider asking any stores that you frequently visit to distribute the bracelets, which could be placed alongside the brochures for added exposure. If you are a JM parent, please consider contacting your local newspaper to see if they will write a story about your child. This will help increase awareness of Juvenile Dermatomyositis; and hopefully increase donations for JDM research to Cure JM. You can see examples of these news stories on the Cure JM website. Thanks for being involved in this important group of Cure JM, and thanks for all of your continued support! I look forward to hearing from each of you! Sincerely,
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One of our new exciting programs at Cure JM is the
