Cure JM Foundation Newsletter
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Heroes Honored at National Conference
Sue Carpenter
Family Support Network Representative extraordinaire, Sue handles the western region. A California native, Sue is mother to twin daughters Kristen and Kimberley, Kristen diagnosed with JDM. Most famously known in our JM community as the "quilt lady," Sue gifts beautiful quilts to JM kids and silent auctions benefitting Cure JM. Sue volunteers wherever there is a need and was especially helpful in the Chase contest where her creative tactics included standing outside Chase banks handing out Cure JM voting cards. To our adored quilt lady, we proudly give our Hero Award.
The Conrad family seems to be holding a fundraiser every time we turn around. When Hudson was diagnosed 2 years ago, the family sprang to action with a series of local fundraisers: Chick-fil-a Spirit nights, Cars for a Cure, bake sales, etc. raising close to $30,000. Along with these events they have raised much awareness for JM, involving their whole community. We are honored to name Team Hudson as a Cure JM Hero.
Kristine is mom to twin daughters Caroline and Katherine, Katherine has JDM. She has held several fundraisers including Christmas Shop for Cure JM and Rockbottom Warsaw. The family helped represent parents and children in March for the resolution recognizing Juvenile Myositis Day by the Indiana State House of Representatives. Most of all Kristine is known for promoting awareness with compassion and enthusiasm throughout the JM community. For this we are proud to award her the Cure JM Hero Award.
Jamie Pater and family, and Cassie Peterson will receive our hero award for their event, Remembering Cyrus-With Every Lap Comes Happiness-Jog for JM. Cyrus is one of our JM "angels" who lost his life at age 11 due to medical complications. His mom Jamie, and teacher, Cassie, were determined that he be remembered with a smile, as Cyrus was always smiling. In May, they organized the jogathon, Remembering Cyrus. They wore orange smiley face shirts that said "I'm happy today… Cyrus" as that's what he would say every day when he woke up. For their courage, and smiles, they are our heroes.
Team Sophie, The Bernstein Family
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Shannon and her mother, Laurel, have been very active in multiple areas of Cure JM. They are mother and grandmother to Eldon, who was diagnosed with JDM several years ago. They have offered creative ideas for fundraising, grant writing, corporate sponsorships and estate planning and have organized local grassroots fundraisers as well. For their creative and strong support, they are Cure JM heroes.
Jacque and Bruce DenUyl
As presented by Shari Hume, Cure JM Co-founder:
This year, the award goes to my very dear friends, Jacque and Bruce DenUyl. Their son, Eric is now 25, and began his courageous battle with JM at the age of 11…he has gone in and out of remission, but right now, he is doing well.
Jacque connected with Cure JM in 2006 when Eric flared. As soon as we met, I knew she would become a major player in helping Cure JM grow and get to the next level. She joined our Board of Directors in 2006 and served as CFO, Secretary, and along with her husband, Bruce, "fundraiser extraordinaire." Read more about the JM Champion Award 2013 Recipients Jacque and Bruce DenUyl.
Presented With Mason Miracle Award
Presented by Rhonda McKeever
Chair, Board of Directors
My life changed for the better the day I met Mason, and over the years, I have had the privilege of getting to know Mason , the entire Smedley family, and their extensive group of friends in the Hillsboro, OR community.
Mason had so 
Despite the rarity of JM, over 400 JM families across the world released red balloons the Saturday after his passing, all in honor of Mason. Balloons were released in Australia, Ireland, in the UK and all over the United States. Every one of these families was inspired by Mason and his great courage in the face of adversity.
Mason was and will always be a true hero and has made a difference in so many lives. Because of this, we have established a special award in his memory: The Mason Miracle Award. This award will be given annually to a special child or family who demonstrates the unfaltering courage, optimism and perseverance that Mason exhibited. This is the 2nd year Cure JM has provided this special award. Last year, this award was given the Mason's family for their exceptional support of Cure JM and sharing Mason with the entire JM community. This year, we are awarding the Mason Miracle Award to Shari, Tom and the entire Hume family. Read more about the Hume Family Receiving the Mason Miracle Award.
Stephanie Stilling
Chicago Conference: 'Amazing'
Our family had an amazing experience participating in the Cure JM 
First-Ever Grandparent Break-Out Session
We had 18 grandparents in the Grandparents Break-Out session, and each one was there because they wanted to learn how they could help other grandparents get involved. To say we accomplished that is an understatement! The ideas just flew back and forth across the room, and each person had not only things to say, they also had that desire to help! BINGO!! SUCCESS!! It's a good thing Mitali was there to take notes, after a while I gave up and just listened. Read more about the Grandparents Break-Out Session.
Focus on Fathers
Fathers shared stories about their children's journeys with Juvenile Myositis at the first-ever "Dads" breakout session at the annual Cure JM conference.
More than a dozen fathers swapped advice on topics such as how to give methotrexate injections to a squeamish child, how best to store and re-use the yellow chemotherapy medication, and how to deal with their child's conflicting need to avoid too much sun exposure while still "fitting in" with the school and social scene. Read more about the Dads' Break-Out Session.
Fundraising Workshop
Advisory Board Member
Two years ago Jane had never heard of Juvenile Dermatomyositis (JDM) and then a family member was diagnosed with this rare condition.
Luckily an experienced Rheumatologist diagnosed the illness immediately and with moderate medication, the symptoms soon disappeared. Internet searches for information led quickly to CureJM.org, Read more about Jane on the Cure JM website.
Family Support Network: IL, IN, MI
Denise Koch is a letter carrier in Ottawa, Illinois. She and her husband Roger have two grown daughters who both live in Chicago. A little over 7 years ago, their younger daughter experienced her initial flare while in high school. Within a few months, she was diagnosed with juvenile polymyositis (JPM). Read more about Denise on the Family Support Network pages of the Cure JM website.
Family Support Network: OH, PA, WV
Erin is a Licensed Massage Therapist who lives in the suburbs of Cincinnati, Ohio with husband, Jason, daughter, Mora, two cats, and a feisty Corgi. Erin is extremely grateful for Cure JM. Because of Cure JM's website, she was able to get Mora, who was born in April of 2009, diagnosed. To learn more about Erin, visit Cure JM.
Family Support Network: LA, MS, AR, TN, KY
Kristen Harvey Prescott was born and raised in south Louisiana and is very close to her family. She has been married to Luke Prescott for 10 years and they have one daughter, Daisy Emma. In February of 2013, Daisy, who was three at the time, was diagnosed with JDM. Kristen did extensive research and found Cure JM almost immediately. Find out more about Kristen and her family online.
Cure JM Hires Fundraising and Operations Staff
Since its founding in 2003, the Cure JM Foundation has grown from the Hume's single lemonade stand to an organization that has now raised over $5 million for research to find a cure for JM. All of what the organization has accomplished in its first ten years, it has done through the efforts of volunteers.
In a strategic planning retreat last January, the Board of Directors decided that it was time to take the step to invest in the organization by developing a professional staff. Board members realized that if the organization was going to continue to grow, the organization needed to invest in its own capacity. For that reason, the Cure JM Foundation Board of Directors is very pleased to announce the hiring of:
Fundraising and Operations Coordinator
Shannon received her B.A. in Economics and International Studies from the University of Kansas. She began her career in marketing at Intel where she managed operations, revenue and demand forecasting for a complex and critical business segment. Learn more about Shannon online.
It's Not Too Late!
Whether or not you were actually able to be present in Chicago to participate in the XSport Fitness Rock'N'Roll Chicago Half Marathon & Mini Marathon, it's not too late to help! Donations are still being accepted so consider making one more request of your family and friends to give to help find a cure for JM!
Send a link to your fundraising page Note that if you don't already have a page set up, you can create one online.
Give your friends and family an update on your fundraising total to date and let them know it's not too late to help. In your final update to non-donors after the marathon, start with "it's not too late to donate and fight JM, and here's why: etc." with a link to your donorpages fundraising website in the first line. The final post-marathon email alone can raise thousands of dollars.In each email, include why you are running and how Cure JM depends on personal donations to find a cure given the lack of pharmaceutical and government funding for rare diseases.
Tailor the emails to people who have already given, and people who haven't donated (yet!). Some friends may donate a few times because they want to help you hit your target! Do not give up if you've asked a few times and someone didn't respond – they're probably just busy, not ignoring you. How many times do you yourself intend to donate to someone's cause, and then just simply forget to follow through?
Email thank you notes as immediately as possible. If possible, handwrite thank you notes to everyone – or at least, ask for an address if you don't have one. For all donations over $1,000, send a personal gift that you know the donor would appreciate like chocolates/ champagne/ red wine/steak. The thank you notes are very important. The next time you fundraise, people will remember your thank you note, and be much more receptive to donating again.
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