Cure JM Foundation Newsletter
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FEATURED STORY
Cure JM is a Top Rated Charity for 2012
Thanks to those of you who submitted such positive reviews of the Cure JM Foundation to the Great Nonprofits website. As a result, the Great Nonprofits organization awarded us as a Top-Rated Charity for the second year in a row.
Below are just a few excerpts from our reviews:
“Because of the information and support we received from Cure JM, we were able to determine that our daughter’s treatment was not sufficient, and transfer her care to a JM expert. She has been improving ever since. I shudder to think where we might be today were it not for Cure JM, and I have personally seen this same story play out over and over again with other families. Cure JM has an incredibly direct impact on those affected by this disease, and I will be eternally grateful to have it as a resource.” Suzy C.
“This past weekend, I attended my first Cure JM Conference…The entire time I spent time with the Cure JM Foundation family, I felt courage coming from each and every one of those in attendance. This could only have been accomplished if the Foundation existed, without them, we would be standing alone. That is something no family should ever feel when dealing with an orphan disease. The Cure JM Foundation deserves to be recognized for this award because they exist for families to have hope.” Pauline L.
Read more reviews or submit your own reviews: http://greatnonprofits.org/reviews/cure-jm-foundation
Make and End-of-Year Donation to Cure JM
Please keep Cure JM in mind with your year-end giving, and please consider asking for donations to Cure JM in lieu of holiday gifts. What better gift is there than giving hope for a cure to the child in your life with JM? Please donate now.
Be sure to check with your company to see if they match donations.
Announcing Cure JM 2013 Annual Educational Conference and Fundraising Event: Chicago July 19th-21st, 2013
We are excited to announce that Cure JM will hold our 2013 Annual Educational and Fundraising event in Chicago on the weekend of July 19 - 21, 2013, in conjunction with the XSport Fitness Rock’n’Roll Chicago Half Marathon and (3 mile) Mini Marathon. More details will be posted on the Cure JM web site before year-end.
We hope you and your family will be able to participate in our event next year. This is one of the best ways to get to know the Cure JM Foundation better and start getting involved.
Order Holiday Cards AND Support Cure JM
Purchase your holiday greeting cards from Cardraising and 30% of your purchase will go back to the Cure JM Foundation. The site offers a great selection of customizable cards with your choice of words and pictures at competitive prices.
The card site will be up year-round, and they have added birth announcements, graduation cards, with more to come. Use the http://www.cardraising.com/CJF00001 link for access to all their cards.
Cure JM Wins $50,000 Chase Community Giving Grant
In September, Chase Bank held a Facebook voting contest to give away $5 million in grants to the 196 U.S. charities with the most votes. Thanks to you, our tireless Cure JM community, out of over 7,000 charities, Cure JM finished in 20th place, winning a $50,000 Chase Community Giving Grant. Thank you to all of you who participated in that effort!
Cure JM 2012 Annual Conference: Recap
Cure JM would like to thank all Team JM members and all of our supporters for helping to make our 2012 Annual Conference and Fundraiser a huge success. We raised over $200,000 in net proceeds for research funding which will go towards our 2013 JM research efforts.
This year's event took place in Baltimore in conjunction with the Baltimore running festival and marathon. Over 150 Team JM runners participated on race day, and over 70 JM families volunteered before and during the event to raise awareness and raise funds for JM research.
Prior to race day, Cure JM hosted an educational event for the medical community at Johns Hopkins. On Friday, October 12th, families kicked off the day attending panel sessions, and JM specialists updated JM families on research progress and conducted a Q & A panel in the afternoon. That evening, a dinner event included a special recognition ceremony honoring many JM families who have really made a difference in the fight to cure JM.
Photos of the event along with research presentations made by some of the JM specialists are available online. The rest of the research presentations will be available once we receive them from the presenters.
Cure JM 2012 Annual Conference: A Runner's Perspective
by Kelly Gaither, Cure JM Advisory Council Member
Kelly Gaither, Erika Bradford, and Suzy Clement on Race Day
On October 13, I ran the Baltimore Marathon in support of our children suffering with Juvenile Myositis and in memory of our Cure JM angels. What an incredible day it was. The weather could not have been more perfect for what I knew would be an extraordinary physical feat. You see, I am not one of those people you look at and immediately think long distance runner. Put simply, I run because I can and my daughter can't.
This was my second marathon and I knew it was going to be my toughest. Training for this was a struggle. I was plagued with injuries and self-doubt, but I knew I had to complete it. I knew this marathon was about something much more than running 26 miles; it was about raising awareness and much needed funds for research to find a cure. For one day, for 26 miles, I could put my fears aside and do what needed to be done.
The race started like so many others, with excitement and loads of adrenaline. I could feel the energy of all those people heading out to do the same thing I was -- to put one foot in front of the other and complete the task at hand. I had two great friends and JM moms to start the race with -- Erika Bradford and Suzy Clement. Suzy and I made it to mile 15 together, talking and laughing at all the crazy things you see in a marathon. She had a sore foot and ankle and I had an angry left hip. Together, we made quite the pair.
At mile 15, the physical realities of the race began to wear on me. I told Suzy to leave me, something she was very reluctant to do. I knew that the next 11 miles were going to get dicey, and I didn't need to take her down with me. At mile 18, I hit the wall. For me, hitting the wall involves uncontrollable weeping and a sudden onset of turrets. I focused on each mile marker, and at every one I started crying again because I was raw and I knew that I was doing something my daughter could not. Remembering all the infusions, procedures, and hospital visits got me through the toughest parts of the race.
Along the way, I met extraordinary people. At the back of the marathon, you meet a lot of folks like me -- running because they have a cause to fight for. I would venture a guess that most of us at the back of the line have never experienced a runner's high. I got the opportunity to evangelize for Cure JM and I got donations along the way. I made it across the finish line before they rolled up the race, something I considered to be a great accomplishment. I got my crab medal and reflected on what I had just done and I was proud, happy, thrilled, exhausted and covered in sweat.
Since that day, I have been asked many times if I will do it again, knowing how challenging it is. Without hesitation, I say absolutely yes. I will continue to run until we find a cure. I'm excited for next year and I invite everyone to join me in our run for a cure for Juvenile Myositis. Let's get started! We have some work to do.
Cure JM 2012 Annual Conference: A First Timer's Perspective
By Darlene Turner Rose
Darlene with daughter Jenna, niece Nicole, and nephew Stephen
As a parent of a child with JM, things have not been easy for the past 8 years. There have been so many decisions that we have had to make...what doctors are we going to go see, what procedures are we going to go ahead and have, what kind of meds are we going to be taking? The questions are endless, but the one decision that I did not hesitate to make was to attend a Cure JM conference.
As a first-time family to one of these events we had so many questions of our own...what is going to happen, who are we going to meet, will we learn anything new about JM? Let me just say that I had always considered other JM families an extension of our family, but little did I know just how close it would feel to meet the other families and get that "warm & fuzzy" feeling. I was so happy to meet everyone face to face and get to laugh and learn together. I loved that we had a meet & greet the first night...that made me feel a bit more at ease, not that I am a shy person or anything.
I was very impressed with all the different workshops they had on Friday...it was hard to choose which ones to attend. It was nice to be in with the other families and get to share our stories and to know that we are not in this fight alone. I loved that all the kids had a place of their own to hang out away from all the adults...they spend enough of their time with adults. I was very impressed with what the JM experts had to offer and although I got a bit lost with their presentation of all the research that is being done to find a cure for JM I still enjoyed listening to what they had to say. I loved that they took time to answer our questions.
The dinner on Friday night was wonderful. There truly are some real JM heros out there! It is amazing the amount of money that such a small group of people can raise!!! It really blew me away!
I think one of the highlights for sure was the marathon!!! I have never done anything like that in my life and I was so happy to have shared that experience with all my other JM warriors! There was such a feeling of love and you knew that each and every person was doing this because of their child or a family member. It’s not every day that special people come into our lives, but we have to treasure them close to our hearts. Yes, JM is an awful disease, and we pray that there will someday be a cure so that no other child or family has to suffer again. The one thing that I would never change, though, is that through something so awful came something so beautiful...each and every one of you!!! This wonderful Cure JM family! Now we just need to know when and where the next conference is going to be so that we don't miss out on all the FUN!
Cure JM 2012 Annual Conference: The Recognition Awards
Cure JM Hero Award Recipients
Angelo and Kelly Vatianou
The Vatianou family has held a golf outing in the Chicago area for the past three years, “Eagles for Eleni”. Their daughter, Eleni, was diagnosed with JDM in 2010. This family immediately put their efforts into fundraising to help the cause raising over $46,000 in 3 years, last year reaching out to and including a nearby newly diagnosed family. The Vatianou family received a Cure JM Hero Award for their current and sustained efforts to support Cure JM.
Juanita and Luis Pannocchia and family
Luis and Juanita Pannocchia with Shari Hume (Cure JM co-founder)
The Pannocchia family is one of our “Angel Families”. Their daughter and sister, Casey, lost her battle with JDM in 2009. Casey’s parents and sisters Randi, Kelly, Martha & Emily have inspired us all by their dedication to raising funds and awareness. The Let’s Move for Casey Walk has raised over $5,000 in memory of Casey and there is a golf outing, Let’s Swing for Casey in the works.
Candi Cook and Team Hope
Candi Cook had the idea to climb Denali in 2009. Forming a team, adopting Mason Smedley as mascot, Juvenile Myositis as the disease and Cure JM Foundation as the nonprofit recipient she realized her goal with Team Hope in 2012, Cure JM banner in tow, no less. For many of you who may have heard the 2012 Denali climb’s news, this was quite a feat. Candi also has participated in many of our marathons and is here to run this one as well, alongside Mason’s mother, Kristen Smedley.
Brylee Smith
Brylee Smith and family with Shari Hume (Cure JM co-founder)
Brylee was diagnosed with JDM in 2010. Her love for puppies and art prompted her to start an organization called B.A.R.K., Bry’s Art Rewards Kids. Brylee has sold her art work to raise funds for Cure JM and to provide art supplies/craft kits for fellow seriously ill patients at the local children’s hospital. She received a commendation from the Governor of Alabama for using her artistic talent to help other children, and then worked to help get a resolution passed for Nov. 30th to be Juvenile Myositis Day in the City of Jasper. Together with her mother, she has brainstormed “Give Me Your Best Shot”, photo submissions of people and celebrities wearing Cure JM bracelets, and has organized fundraisers including the first Cure JM Turkey Day Run in Jasper. Brylee Smith was awarded a Cure JM hero award for efforts in spreading awareness, creatively supporting fellow patients, and fundraising for Cure JM.
Pauline Lenz
Fondly known as Ninja Nana, Pauline Lenz has been a true inspiration to all of us this year. A professional baker, she spread the word with Cure JM cookies, one sweet treat at a time. She arranged for Chuck E Cheese Ohio Fundraisers in 19 different locations with the possibility of going National and arranged for a resolution passed for Cure JM Day in Toledo, OH on Oct. 13, 2012! She was the force behind the red balloon release to honor Mason Smedley which spread around the world and has given our JM community consistent and heartfelt patient support.
Cure JM Hero Award Recipients from Oregon
The next few Cure JM Heroes do not have a child or relative with JM. They are simply wonderfully empathetic and loyal friends who are champions to our cause. Not surprisingly, these most genuine of friends found their connection with Cure JM through the Smedley family in Oregon.
Jeanie Jarvis
Jeanie Jarvis has for several years now managed the tremendously successful auction in conjunction with the Cure Kids Jam and Festival.
Leslee Hansen
Leslee Hansen, as a right hand to the Smedley family, once again helped deliver a very successful summer concert and helped double the money raised from last year to this year.
Intel Motorcycle Club – Chuck Taylor & Brian Launer
Our final Cure JM Hero award honored members of the Intel Motorcycle Club, Chuck Taylor and Brian Launer, who hold an annual motorcycle ride to benefit Cure JM. This year they secured a $10K motorcycle to be raffled off, rallying the entire motorcycle club to sell tickets. They also renamed the annual ride to be the Mason Smedley Memorial Ride.
New Awards
Cure JM Champion Award Recipient - Marge Coffey
Marge Coffey with Shari Hume (Cure JM co-founder)
This new award very deservingly went to Marge Coffey. Marge is the grandmother of a child with JM and has been an exceptional supporter of Cure JM Foundation. Marge has helped Cure JM significantly advance research and improve the lives of every child with JM.
Mason’s Miracle Award Recipient - Smedley Family
(The following is from co-founder Shari Hume’s presentation of the Mason Miracle Award)
We lost a very special boy in June, Mason Smedley. Mason had so many gifts he shared with everyone. Mason’s smile always lit up a room, and his sense of humor, his charm and his warmth instantly made everyone love him. JM families were inspired by Mason and his great courage in the face of adversity. Because of this, hundreds of red balloons were released all over the world, signaling that Mason’s heroic spirit will live on. He was, and will always be, a true hero and has made a difference in so many lives. To honor this, Cure JM Foundation has established a special award in his memory: The Mason’s Miracle award. This award will be given annually to someone who carries on the spirit of Mason, and demonstrates the unfaltering courage, optimism and perseverance that Mason showed us all.
The first year, this award goes to a family who has held annual fundraisers for the past 4 years, raising awareness of JM, as well as $300,000 for research. This family has brought their community together to support Cure JM. In fact, in their city, Cure JM is a household name! They have also brought the JM community closer together. This family has been a role model for me, personally, on how to make a child’s life as normal as possible, while also making it as meaningful as possible. This family provides hope for people who don’t even know they need hope now. The 1st year, Mason’s Miracle Award goes to the Smedley family: Damon, Kristen, Brock, Alec, Abby and Mason.
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