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Cure JM Foundation 2014 Hero Award Winners

The Cure JM Hero Award was created to recognize outstanding achievements in raising both awareness of JM and research funds to battle Juvenile Myositis. Here are the Hero Award Winners for 2014:

Samantha Kountz-EdwardsSamantha Kountz-Edwards

Samantha and fellow researchers from Palo Alto University in CA contacted Cure JM in 2012 to study "The Psychosocial Impact of Juvenile Dermatomyositis on Patients & Parents". This study sought to identify the quality of life of children with JDM and the psychosocial family impact of JDM. Samantha had a personal connection to the disease, as she had a lost a dear friend to JDM when she was younger.

In early August 2013, Samantha and fellow researchers had the opportunity to present their research study titled, "Juvenile Dermatomyositis Significantly Affects Quality of Life," at the American Psychological Association annual convention in Honolulu, Hawaii. This study supported the need for organizations with strong family support networks, such as the Cure JM Foundation, who can play a role in improving the overall quality of life for both the child with JDM and his/her family. Cure JM foundation thanks Samantha and all the researchers involved in this study.

On top of all that, for the second year in a row Samantha also rallied a team of runners for the Cure JM national fundraising event.

Robert, Carol, Anna and Elliot RamseyRobert, Carol, Anna and Elliot Ramsey

Not long after finding out about Cure JM, the Ramsey family immediately became involved. They registered to attend the 2013 Cure JM Conference in Chicago and saw hope through connection and hope for research and one day a CURE for JM!

During the Crowdrise Holiday Challenge, they volunteered their time and efforts to help Cure JM raise much-needed JM research funds and helped Cure JM win the $100,000 Crowdrise 1st place prize.

They helped to represent Cure JM at a Los Angeles Christmas party benefitting Cure JM & CHLA and helped educate others by sharing their journey with juvenile myositis.  It is this journey with JM that convinces them of the need for a Cure, as they have resumed their fundraising in honor of Anna’s brave battle for this San Jose conference.

It was through Anna's inspiration and friendship that her high school friend & game developer, Owen Leddy, decided to devote all the proceeds from his latest computer game to Cure JM. "Pathogen Wars," an action-packed game that teaches about a healthy immune system, has already raised almost $1K and continues to be downloaded through Owen’s GameFace Interactive website.

Anna and her family are also hosting an art show to benefit Cure JM. ANNA RAMSEY HABITS OF THE BODY will be February 26th,2015 in Los Angeles, CA. The event will feature art, food, music and a silent auction.

CLICK HERE FOR MORE INFORMATION

CLICK HERE FOR A SHOW FLYER

Steven and Dominique WesselDominique and Steven Wessel

The Wessels have an interesting connection with Cure JM.  They were initially connected with Cure JM through a relative who was a neighbor of Cure JM co-founders, Tom and Shari Hume. Since then, the Wessel family has been very active in Cure JM holding multiple fundraisers. Most notably, they partnered with board member Ragan Cantrelle in 2011 and 2013 to hold the "Swing for a Cure" golf tournaments in Louisiana in 2011 and 2013. These events raised over $75,000 for Cure JM Foundation.

The Wessels were instrumental in bringing in both sponsors and golfers, which was critical to making these two events successful.

The Wessels continue to support and spread awareness of Cure JM and our need for a cure for Juvenile Dermatomyositis. The Wessel and Cantrelle families are in the beginning stages of planning their next tournament, scheduled for the spring of 2015.

Kanny and Leslie RetifLeslie and Kenny Retif

As good friends of Steven and Dominique Wessel, Leslie and Kenny Retif have been both major sponsors and participants in the “Swing for a Cure” Golf Tournaments in Louisiana.

The Retif family of Retif Oil holds their own golf tournament every year in November called “Change for Children.” 

In 2013, they generously chose the Cure JM Foundation to be the sole benefactor of that tournament. They were able to time their generous $50,000 donation so that it helped Cure JM secure the $100,000 grand prize in the 2013 Crowdrise Holiday Challenge.

Erin and Dmitri DuvalErin and Dmitri Duval

For the past several years, Erin and her son Dmitri have regularly volunteered for Cure JM, both while Dmitri was undergoing treatment for JM and after he entered remission. From her earliest involvement in the Queens, New York, Fashion Show Benefit for Cure JM, to “Dodgeball for a Cure” at a nearby college in Vermont, Erin has been dedicated to helping to raise awareness and research funds for Dmitri and all kids with Juvenile Myositis.

Creative fundraisers have been a team effort for mother & son. “Paracords for a Cure,” raised funds for Cure JM during the Crowdrise Holiday Challenge through the sales of handmade paracord wristbands & keychains. “Logs for a Cure” made a prediction the New England winter would be cold and raised research funds through a winter firewood fundraiser!

Erin & Dmitri organized both kids and adults Cure JM Running Teams for a regional New York race in 2013. They have also represented Cure JM runners in other regional races and national Cure JM events.

Erin started a private Facebook group for JM parents, caregivers & young adults.  Over the years, “JM Moms & Caregivers” has grown to more than 450 US & international members, who provide mutual support and encouragement for JM families dealing with the ups & downs of a serious illness.

Erika BradfordTeam Gary: Erika Bradford & Family

Once a self-identified “non-runner”, Erika has gone on to become a marathon runner and triathlete, representing Cure JM in approximately 40 local & regional races.

She and her family — otherwise known as “Team Gary” — have traveled from Washington state to participate in several of the Cure JM national fundriasers and volunteer at many of the recent conferences. Erika has been also volunteered countless hours to help Cure JM win various voting contests for JM research funds.

She strives to come up with unique, positive ways of sharing Gary's battle against JDM and spreading awareness of Cure JM. Whether through submitting their story to Runner's World as part of a contest, or by sharing their JM journey through creative social media images and posts, Erika seeks to educate others about JM and the need to help researchers find a cure.

During online fundraising, she brainstorms creative ways to thank and encourage her donors using social media postings and photos. For instance, donors can “Sponsor a Mile” for each mile of her Cure JM race, or “Sponsor a Name” of a JM child which is written with a Sharpie marker on her legs.

Erika also volunteers her time by sharing emotional support & encouragement to many other Cure JM families newly diagnosed or dealing with some of JM’s complications.

Texas Mini ConferenceThe Taylor Family: Sissy, Brett, Kaci & Kory

For the past two years, there has been a regional Cure JM Mini-Conference in Texas in the summer thanks in large part to the Taylor family. Procuring sponsors, donated food and entertainment, the Taylor family created an event where JM kids and their families could spend a carefree day sharing encouragement and just having fun. Kaci Taylor handmade her signature “Kaci Cozie” fleece blanket for each child attending. The Taylors also rallied mini-Conference families as “TEAM TEXAS”,  Virtual Volunteers for both Chicago & San Jose events.

To stay connected between mini-conferences and to share ideas, Sissy  started a private Facebook group, the “Texas Cure JM Fundraising Page”, where fellow Texas Cure JM families of almost 90 members could find mutual support, share ideas, and help support each other's fundraising events.

The Taylor Family creatively named and decorated “Cure Cans” to collect spare change around the house or at local businesses, and through this effort have raised hundreds of dollars. Whether it’s spreading awareness through regional races as Cure JM walkers/runners or educating others at Fall Festivals or supporting and encouraging their fellow Cure JM families in Texas, all the members of the Taylor family are Cure JM Heroes.