Cure JM Foundation Newsletter
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FEATURED STORY
In Loving Memory of Mason Smedley
June 19th was a sad day for the entire JM community, as we learned of ten year old Mason Smedley’s passing due to complications from JM. Mason lived in the Portland area, and had struggled with the impact of JM for most of his young life.
With his courage and determination to find a cure, Mason served as both an inspiration and an ambassador for the Cure JM Foundation. He and his family have worked tirelessly to raise funds for JM research and promote awareness of this terrible disease, most notably organizing the Cure Kids Jam and Fest, an annual concert and festival benefitting Cure JM.
Please view this touching tribute video Mason's family has put together.
Friends of Mason gathered at his home and all over the world to celebrate his life by releasing red balloons on June 23rd.
in Washington D.C. in New Zealand
In lieu of flowers, the Smedley family is requesting donations to Cure JM Foundation in honor of Mason at http://curekidsfest.com/3/donate.htm.
Also, we at Cure JM invite you to encourage your friends and family in the Pacific Northwest to attend this year’s annual Cure Kids Jam and Fest in Hillsboro, Oregon (outside of Portland) on August 19th to show our community's love and support for the entire Smedley family. See article on the event below.
Losing Mason has made our resolve to find a cure even stronger, and we urge you to please get more involved with Cure JM so we can increase the awareness of this orphan disease, get better treatment options and, ultimately, a cure. Our organization is run by volunteers -- so we can always use help. We are calling on ALL JM families to put their passion and talents to help us find a cure. Get involved -- for Mason and for all our JM kids!
Annual Educational Conference and Fundraising Event
Sign Up Now for Annual Conference
One of the best ways to get to know the Cure JM Foundation better and start getting involved is to attend Cure JM’s Annual Conference for JM children and their families. This year’s conference will be held in Baltimore from October 11th-13th in conjunction with the Baltimore Under Armour Running Festival.
Families who have attended past conferences have left with new friends who understand what they are going through, greater knowledge of JM, and – perhaps, most importantly – feelings of empowerment from helping Cure JM create awareness and raise much needed research funding.
The weekend's events are:
- A welcome reception, with food and drink, where conference participants can meet one another.
- Intimate breakout sessions about coping with real life issues facing JM patients, families and caregivers.
- An educational forum for families with experts from Lurie Children's Hospital of Chicago, The Mayo Clinic and the National Institutes of Health discussing progress in finding better diagnostic tools and treatments that may ultimately lead to a cure.
- A recognition dinner to celebrate our attendees and their efforts to further JM awareness and research.
- The Under Armour Running Festival, featuring many Cure JM runners and volunteers participating in events from a 1-mile kids' fun run to a full 26.2-mile marathon.
We encourage all attendees to participate in fundraising. Please note that you do not need to be a marathon runner, a runner at all, or even go to Baltimore to participate in fundraising for this event.
There are several shorter distances available at the Under Armour Running Festival for those of you who are not ready to run a full marathon just yet: a 4 Person Marathon Team Relay, Half Marathon, 5K, and even a Kids Fun Run.
For the non-runners who are attending the conference, you may raise funds as a race volunteer and help generate awareness.
For those of you who cannot go to Baltimore, but still want to support our single largest Cure JM event of the year, you can do so as a Virtual Volunteer. Support awareness and fundraising efforts from home, simply by setting up an online fundraising page at www.firstgiving.com/curejm and sharing your page with your friends and family. Families that raise $250 or more will receive Cure JM t-shirts.
Orphan diseases like JM need the support of all families affected if we are to find a cure. We strongly encourage all families to sign up and make travel arrangements now.
Click here to find out more and register to help
Click here for an invitation letter from the Chairman of the Board
Click here for the event flyer
Click here for conference schedule and travel information
Announcing Medical Community Forum
On October 11th, Cure JM is partnering with Johns Hopkins in Baltimore to develop an educational forum designed specifically for the medical community to increase awareness of JM. We hope this forum will facilitate greater collaboration with the medical community to create more effective JM treatments and hasten the development of a cure.
To enable the medical professionals to have a day of candid and open discussions, JM patients and their families are not included in this event. All research presented at this meeting will be shared with the JM families at the education forum for families during the family conference on October 12th.
If you have a treating doctor or a healthcare professional to whom you would like to extend an invitation to the medical community forum, please contact Patti Lawler at Patti.Lawler@curejm.com.
One JM Mom's Story - I Run For Those Who Can't, My Son Included
by Erika Bradford, JM Mom
I run. Me. Who would have thought I could do it. I can’t believe I broke through. I can’t believe it took me till 37 years old to figure it out. I mean, I ran 2 or 3 miles when I was in my teens. I think my longest run was 4. I remember thinking that was the greatest success. Wow, was I wrong. When I stop and think about what brought me here, it sort of is a tingly feeling. Like swallowing a few stars. I feel them buzzing in my soul.
I didn’t go in order. No silly 5k’s. Meh, a 10k, bah. I ordered big! I started with the big Kahuna. The grand daddy of races. A full marathon. The marathon I picked was in Austin, Texas. It was a special marathon. It took place in February of 2010. My decision to run was made one day on an attempt to run two miles with my friend in late October. Yes, you read that right, October. That was four months. Now I don’t want to brag by any means because I can’t. When I shared the news with my family, I got mixed reviews. “You might get hurt.” True. “Are you crazy?”. But as the miles started racking up, the belief started to filter in. I needed all the belief in the world.
February 14th, 2010 came. There I was in Austin, Texas at the start line. It was 6am, cold, and I was more scared than I could imagine. Nothing was staying down. Stuff was coming out, even tears fell. I couldn’t believe what an absolute wreck I was. My sister and her husband had driven me to the start line. I wasn’t sure if they were placing bets or not, but they shoved me out into the mass of people. I pleaded with my body to calm down. I begged it not to barf. Suddenly, it was go time. The guns went off, fireworks lit the morning sky. The first ten steps past the start line, my mind and soul eased. I melted into the lovely addiction of running. It happened that quick. First half mile and I was in love. If you could enter into holy matrimony with running, then I do! The courage, the strength, the pain, the everything, it is so very worth it. Sure by mile 15, my feet had something different to say. But those same feet have done another and another and another. Th ese same feet are willing to do more.
Crossing the finish line of my first marathon brought a release. A shift in my soul. I showed me I could do whatever I wanted to do. I thought about really how I got there. The reason is a twisted terrible thing for a mother. In May of 2009, my youngest son who had just turned two, was diagnosed with a rare auto immune disease called Juvenile Dermatomyositis. The doctors explained his own immune system was attacking his healthy skin, and muscle. The rash I was seeing was his bodies attempt to damage and destroy it. The reason he laid on the stair all day was his muscles were inflamed. They became weak. Our family was devastated. Gary was the first in our family, out of all the grand children to become ill, with no way to fix it. There is no cure for JDM.
We were thankful to hear it is treatable, however, what was supposed to be encouraging soon turned on us. The side of effects of the medications were just as much to deal with as the disease. Chemotherapies, high dose steroids, countless medications have ruled our lives for the past three years. Being outside, something he loved, turned into a dangerous factor for him as the sun triggers his disease to activate. We were very lucky to find a group of people who started a foundation in support of the children and families afflicted with JDM. The Cure JM Foundation!
I run because there are people who cannot. I am a healthy, fully functional human being, who was drowning my sorrows and fears in M&M’s at my child’s bedside. Letting me go to waste. Nothing hurt on by body, except for my heart. My heart broke the day I found out my child’s destiny- to fight a nasty disease, instead of run and slide into home plate. He will always fight. If he is not fighting, then he will worry when he will have too. I run to show him to let it all go. I run to show my children there are things in life that are not easy. Don’t walk away from them, run to them! Run to it and give it all you’ve got.
Introducing Medical Advisory Committee
by Patti Lawler, Cure JM VP of Research
Did you know that Cure JM has a Medical Advisory Committee (MAC) composed of physician experts in JM? We are proud to say that Lauren Pachman, MD, Ann Reed, MD and Lisa Rider, MD are part of our MAC.
They have recognized the importance of Cure JM’s mission and have agreed to serve as medical experts in an advisory capacity to the Cure JM Foundation. The MAC offers advice to us on medical/educational issues, helps us identify key research initiatives in the JM area, and have been wonderful supporters and speakers for the Cure JM Foundation! We are grateful for their support, as Cure JM has been able to move forward on our mission to increase awareness of JM and support research in the hopes of finding a cure!
Introducing New Advisory Board Members
Amy Gleason, RN
Amy Gleason with daughter Morgan and Cure JM Chair Rhonda McKeever
Amy became involved with the Cure JM Foundation after her daughter Morgan was diagnosed with JM in June 2010 after more than a year of being undiagnosed and misdiagnosed. When Amy could not get into a specialist in her area for three months, she turned to the Internet and found the helpful Cure JM message boards. From that moment on, Amy felt part of a larger community, and it helped her whole family not feel so alone and scared after the initial diagnosis.
Amy works in software and social Web development as the Chief Operating Officer for Continuum Labs, Inc., which has a focus on solutions for patients and their caregivers. With a background as a Registered Nurse, Amy has worked as a nurse in the emergency room and surgical settings. For over sixteen years, she has worked in the Electronic Medical Record (EMR) industry and has been involved in the creation, development, and implementation of EMRs. She believes that these technology changes in digitizing medicine can have a huge impact for patients and their families. She is also involved in the Society for Participatory Medicine, and she advocates for patients being active participants in their medical care.
Amy lives in Tampa, FL with her husband, Mike, her daughter, Morgan, and her stepchildren, Christopher, Katie, and Michael. She raises awareness for Cure JM at every opportunity that she can find. Going from a couch potato to a runner and triathlete, she ran her first marathon to raise money for Cure JM in December 2010. Amy believes fundraising for research and raising awareness of JM are the key to finding a cure. In the meantime, she is engaged in the Cure JM community online, as well as in person, and strives to help others find solutions for the many challenges presented by JM.
Jennifer Smith
Jennifer Smith with daughter, Brylee
Jennifer W. Smith became involved with Cure JM Foundation shortly after her daughter, Brylee, was diagnosed with JDM at age 10 in November 2010.
Jennifer is a graduate of Auburn University with a BA in Communications. Using her work experience and education, Jennifer is very active in raising awareness and funds for Cure JM. She shares this ability and desire with her two children, Brylee and son Sawyer. Together they began a nonprofit organization, B.A.R.K. that raises money from the sale of Bry’s Art to reward kids, donate, and bring awareness to the Cure JM Foundation. As a result of the family’s efforts, not only has the City of Jasper designated 11/30 as Juvenile Myositis Day, but Brylee also received a commendation in 2011 from the Governor of Alabama for using her artistic talent to help other children.
The Smith family uses their time volunteering with local special needs groups that Jennifer helped establish such as the Dream Team baseball and soccer league as well as the Aquanauts, a special needs swim team.
Jennifer serves on various boards including those of the Samuel Lee Smith Advised Fund, Bry’s Art Rewards Kids (B.A.R.K.), the Walker Area Community Foundation, and the Walker County Arts Alliance. Active in fundraising for her church’s youth group, Jennifer also helps coordinate events and manages social media for other nonprofits and businesses in her community.
Fundraising Families
by Shari Hume, Cure JM Co-Founder
Fundraising has become an important part of the lives of many Cure JM families. Leading an event and raising crucial research dollars can help families cope and heal in their fight against JM.
Warr Family 5K
Taking on a fundraiser can also be beneficial to the child with JM, as Kirsten Warr discovered recently at a 5K run honoring her son, Liam (age 5). Kirsten said she “loves seeing his spirits lifted by the support and love he has received through the run.”
Kirsten also increased awareness of JM in her community by attracting over 500 runners and raising $13,000. The highlight of the race was when Liam ran his first mile ever. Kirsten said, “There was not a dry eye around when he crossed that finish line!”
Liam, right, running his first mile
Sall Family Walk-a-Thon
Another successful event was organized by Jana Sall on behalf of her son, Griffin. The Sall family held their 2nd annual walk-a-thon at the Sweet Pea Academy, a local preschool where Griffin was a student last year. Jana was able to secure both television and newspaper coverage to help increase awareness of JM.
http://www.kapptv.com/article/2012/apr/25/young-pasco-students-raise-money-help-fight-incura/
Griffin’s former classmates raised almost $5,000 for JM research. Jana is heartened by the outpouring of support from her community. She said, "It's an amazing feeling. Pretty humbling how much they come out and support us.”
Griffin (in hat) and friends at walk-a-thon
Cure JM Team Hope Mountain Climbers
A team of private climbers, Cure JM Team Hope, recently summited Mt. Denali, the highest peak in North America to raise awareness and funds for Cure JM. The four climbers were inspired by 10 year old Mason Smedley, who lost his fight with JM shortly after their climb. According to team member Candi Cook, Mason had “symbolically climbed many mountains and had the uncanny ability to positively touch people’s lives within moments.” The climbers spent many weekends training for this adventure and proudly carried a Cure JM banner on every climb.
Their amazing efforts have raised $3,000 for Cure JM.
To learn more about Cure JM Team Hope’s journey, go to: http://www.curejmteamhope.myevent.com/
Cure JM Team Hope
Upcoming - Smedley Family Cure Kids Jam & Festival
The 4th annual Cure Kids Jam & Festival is coming up on August 19th in Hillsboro, WA. This event provides a full day of entertainment with a fabulous line-up of musicians. The concert features 2012 Artists in Music’s Best Folk/Acoustic artist and winner of Album of the Year: Lisa Sniderman, aka Aeode. This event is very special to Lisa, as she has dermatomyositis.
Also featured in the concert are Blake Lewis, previous American Idol finalist, and up and coming artist, Jessica Lerner. Festival activities appeal to kids (and adults) of all ages and include a video game bus, a human-sized hamster ball, a robot you can climb into, face painting, and more.
Over the past 3 years, Damon and Kristen Smedley and a very supportive community have raised over $150,000 through this event. This year’s event is especially poignant. The Smedley’s son, Mason, lost his battle with JM on June 19, 2012.
For more details about the concert, go to: http://curekidsfest.com/3/events.htm
2010 Cure Kids Jam & Festival
Upcoming - Pannocchia Family Golf Tournament
Plans are also underway for the “Lets Swing for Casey Golf Tournament” on September 29th in Duncan, SC. Kelly Pannocchia is spearheading this event in memory of her sister, Casey, who passed away at the age of 19 due to complications of JM. Although devastated by her sister’s loss, Kelly said she “came to realize that each life has an enduring impact on the world far beyond the time they are actually here with us. Casey inspired us with her strength and tenacity to fight her disease and we want her determined spirit to inspire other children afflicted with Juvenile Myositis.”
Casey’s spirit has inspired and impacted so many lives, and she makes us more determined than ever to find a cure. To learn more about Casey and the golf tournament, go to:
http://www.firstgiving.com/fundraiser/letsswingforcasey/letsswingforca
Casey Pannocchia: Her life and spirit are an inspiration!
Upcoming - Szyszko Family Benefit Concert
Olivia Szyszko
On Saturday, July 14th in Grand Rapids, MI, JM mom, Jill Szyszko is hosting the Cure Jam Cure JM Benefit concert in honor of her daughter Olivia. JuxTApose & Chasing the Sky will be playing at 7pm at Sazerac Lounge. Sazerac's is graciously donating 100% of the 5 dollar cover and 10% of food sales to the Cure JM Foundation!
Upcoming - Vatianou Family Golf Outing
Eleni Vatianou
On Sunday, August 26th in the Chicagoland area, JM dad, Angelo Vatianou, will be hosting Eagles for Eleni, his 3rd annual golf outing at Bliss Creek Country Club in honor of his daughter Eleni. Eleni will be entering the first grade this fall, and her parents report she has made huge strides in the two years since her diagnosis. They hope to build on the success of their last two golf outings which raised a total of nearly $35,000 for Cure JM.
The Vatianou family writes: “We believe that research, education, awareness, and faith will ultimately make the difference in what the future holds for Eleni’s health.” If you would like to donate raffle prizes or volunteer on the day of the event, please contact Dr. Vatianou at angelo20_20@yahoo.com.
Upcoming - Tuma Family Golf Outing
Clara Tuma
On Monday, October 22nd, in the Dallas Fort Worth area, JM mom, Stacy Tuma, will be hosting her 2nd annual golf outing, Cure Fore Clara, at Coyote Ridge Golf Club. She is looking to get other JM families involved in the event. If you want to help, please email Stacy at stacytuma@yahoo.com.
Upcoming - Oregon Motorcycle Raffle
Intel Motorcycle Club’s Oregon Chapter is raffling off a 2012 Kawasaki ZX-6R with proceeds going to Cure JM in memory of Mason Smedley. Only 1,000 tickets will be sold, and currently there are only 370 tickets remaining. Note: This raffle is an Oregon licensed event and all Oregon residents are eligible. Residents of other states would need to check with their state laws regarding eligibility. More details are available at http://www.pdxriders.com.
Want to Do Your Own Fundraiser?
If you are interested in planning your own fundraiser, please contact Shari.Hume@curejm.org for help getting you started.
For those of you who have a major milestone coming up, be it a wedding, birthday, or anniversary, you may want to consider asking for donations to the Cure JM Foundation in lieu of gifts.
See Jacque and Bruce DenUyl’s Soaring to Sixty fundraising page http://www.firstgiving.com/fundraiser/jdenuyl/soaring as a stellar example. They have raised over $40,000 towards their $60,000 goal.
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