Cure JM Foundation 2016 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 2016:

Stilling FamilyThe Stilling Family: Stephanie, Brad, Haddie & Josie

The Stilling Family - Stephanie, Brad, Haddie & Josie - are a family of Cure JM Heroes!

Getting involved with Cure JM after their daughter was diagnosed, Team Haddie enthusiastically started fundraising for the Chicago conference and continued with Crowdrise and future conferences. Local fundraising events in 2013 & 2014 called the “Classy Red Hats of Kildeer” helped to raise JM awareness in their community and funds for a cure. Together with participation in online fundraising, The Stilling Family has raised over $30,000 for Juvenile Myositis research!

We are pleased to award The Stilling Family: Stephanie, Brad, Haddie & Josie, a Cure JM Hero Award! Congratulations, Stilling Family, you are an inspiration to all of us and true Cure JM Heroes!

The Coe Family

Jennifer Coe and family of Bloomington, IL have been incredibly helpful volunteers with Cure JM for more than 4 years. If you’ve ordered a Cure JM wristband, you can thank Jen and her family. Jen has faithfully managed Cure JM wristband orders and distribution since 2011. In addition to that they organized local fundraisers in honor of Kennedy Coe’s fight against Juvenile Myositis. “JAM for JM”, a musical talent show for the benefit of Cure JM research, raised several thousand dollars and was organized by the whole family. The 2016 JAM for JM is already being planned!

We are pleased to honor The Coe Family with a Cure JM Hero Award!

Erin Curtis and DaughterErin Curtis

Erin Curtis first discovered Cure JM when searching the internet investigating mysterious rashes of her then 16-month old daughter. Erin has been volunteering as a Family Support Network Regional Representative for the Eastern Central region of Kentucky, Ohio, Pennsylvania & West Virginia since 2013. As a member of Cure JM’s Leadership Council, Erin has volunteered as a fundraising coach for online fundraising. She has provided essential graphic design support for conferences, fundraisers, voting contests and more. Her volunteer work has greatly enhanced Cure JM family support programs and fundraising efforts.

We are pleased to award Erin Curtis a Cure JM Hero Award! Congratulations, Erin, and thank you for being an inspiration to all of us and a true Cure JM Hero!

Nikki HahnNikki Hahn

Determined to find a cure for her daughter, Addie, Nikki Hahn teamed up with the Taormina family from Westchester County, New York to organize a large Dinner Auction Event called “Beverages, Bites & Bidding”.

This gala dinner event 10-months in the making helped raise over $60,000 for Cure JM research and education programs.

In addition to fundraisers, Nikki joined the Cure JM Leadership Council this past fall and has already dedicated numerous volunteer hours in her role.

We are pleased to award Nikki Hahn a Cure JM Hero Award! Congratulations, Nikki Hahn, for the many ways in which you inspire all of us. You are a true Cure JM Hero!

Gaby & Russell Taormina

Gaby’s son Russell’s continued fight against JDM inspired her to work with Cure JM. Working together with Russell, Gaby organized a text-to-cure fundraiser at Iona Preparatory School in New Rochelle, NY that coordinated with Cure JM social media and Myositis Awareness Day. Together with Nikki Hahn, the successful “Beverage, Bites & Bidding” Dinner Auction raised tens of thousands of dollars for Cure JM research grants.

We are pleased to award Gaby & Russell Taormina a Cure JM Hero Award!

prescott_640x776Kristen Prescott & “Cure for Daisy”

Kristen Prescott began volunteering with Cure JM just months after her then-3 year-old daughter, Daisy, was diagnosed with JDM.

Co-hosting Swing For a Cure with other families in Louisiana got them excited about the difference they could make for a cure. Through local and online fundraisers, Kristen and her family have raised tens of thousands of dollars for Cure JM and shared awareness through local media coverage. These events include “Dressing for Daisy”, a large children’s fashion show benefit that included several brand-name sponsors and several TV & newspaper interviews. Since 2013, Kristen has also been a dedicated Southern Regional Representative, helping current and newly diagnosed JM families in Louisiana, Mississippi, Arkansas, and Tennessee.

We are pleased to award Kristen Prescott & “Cure For Daisy” a Cure JM Hero Award! Congratulations, to Kristen Prescott, you are an inspiration to all of us and a true Cure JM Hero!

Shobe FamilyThe Shobe Family

Shari Shobe, who is inspired by her young adult daughter Kelsi, describes the day she found the Cure JM website as one of the best days of her life. Shari is a dedicated member of the Cure JM Leadership Council, volunteer, and fundraiser.

Shari and her family have been dedicated volunteers at conferences as well as incredibly enthusiastic volunteers with online fundraisers and voting contests. We’ve lost count how many times Kelsi has gladly helped in the Kids’ room!

Since attending their first Cure JM conference in Carlsbad, CA in 2009, the Shobe Family immediately looked for ways to get involved. They have organized grassroots fundraisers since 2010, through Swing Fore Kelsi Golf Tournament, an annual event since 2013. Over the years, they have raised tens of thousands of dollars! Serving JM families as a volunteer Regional Representative, Shari has been the contact for JM families in the Southeastern Region of Florida, Alabama, Georgia, and North and South Carolina since March 2011.

We are pleased to award The Shobe Family a Cure JM Hero Award!

Dave Venghaus & Chris Graves

Through his optimism, perseverance, and resilience in the face of adversity, Chris Graves shows us all the true meaning of being a hero.

In the summer of 2002, Chris, then 13-years-old was diagnosed with Juvenile Dermatomyositis at Children’s Hospital of Los Angeles. Chris battled a severe case of JM, eventually going into remission.

Chris has been part of Cure JM since day one. His mother, Joyce, was a member of the early Cure JM board of directors. Chris and his family attended the first-ever Cure JM event at Shari and Tom Hume’s house about 11 years ago.

With their band, The Graves, Chris and his brothers have volunteered at the Carlsbad Marathon and the Cure JM benefit concert in Oregon. Together with friend Dave Venghaus, Chris also organizes an annual Holiday Party benefiting Cure JM and Children’s Hospital of Los Angeles.

Dave Venghaus was right by Chris’ side when Chris became ill with JM, visiting Chris at CHLA almost every day. Their relationship became the motivation for an annual event: a Holiday Party to benefit the nonprofits that helped Chris. This event has been held annually for 9 years, and it is growing every year!

Dave provides an incredibly special party where California Cure JM families can come together, some of whom have never met another person with JM.

Through his Holiday Party, Dave helps Cure JM raise funds and awareness for Juvenile Myositis.

We were honored to award Dave Venghaus and Chris Graves their individual Cure JM Hero Awards in person at the Holiday Party benefiting Cure JM & Children’s Hospital of Los Angeles.

Taylor FamilyThe Taylor Family: Sissy, Brett, Kacie & Kory

For the past three 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 & entertainment.

As dedicated FSN Regional Representatives for Texas, the Taylors have provided support to numerous newly diagnosed JM families. They created “TEAM TEXAS”, an online fundraising group for the past three Cure JM conferences. They also started a closed regional Facebook group for mutual support and fundraising ideas.

The Taylors have organized numerous grassroots fundraisers, from sales at a local craft market to a community ice bucket challenge for JM research, from “Cure Cans,” creatively decorated cans to collect spare change for Cure JM to fundraising at local at Fall Festivals & regional race events. In addition to encouraging fellow Cure JM families, the Taylor family have rallied their extended family in their efforts for Cure JM which include Kory’s aunt, Connie Hetzel, and Kory’s great grandmother, who just celebrated her 102nd birthday

We are pleased to award The Taylor Family: Sissy, Brett, Kaci and Kory a Cure JM Hero Award.

Claudon FamilyCarol Claudon

When Carol learned that the Cure JM event was going to be in St Petersburg FL she immediately volunteered in honor of her nephew Eric DenUyl. She lives nearby with her husband Chet. Son Scott is at Georgia Tech in Atlanta, son Ches graduated from Emory and is now working on a statistics degree.

Carol brought all Jacque’s sisters in without Jacque first knowing. After caring for their mother during the last month of her life, the 4 sisters called each other “Understanding Sister” and named themselves “Team US”. The entire Team US was part of the Kids’ room along with their spouses.

Team Claudon-DenUyl also includes Ches’s girlfriend Kristi, Clark DenUyl and his girlfriend Maris, who also participated in the National Fundraiser at the Walgreen's St. Pete Beach Classic Half Marathon.

Ches Claudon (our very own Hans Solo), is part of the 501st Legion, a nonprofit volunteer group of screen accurate Star Wars cosplayers (actors in authentic costumes). The group goes to charities and hospitals and we were lucky enough that the troupe came to our national conference as part of the kids room. Because of the new release of Star Wars, this group could have been anywhere on that day. They were with us.

Thanks to Carol, the 2016 kids room was staffed by certified teachers for the first time. We have never had so many be part of the kids room and have never been so staffed and organized ahead of time.

Carol brought in over 30 volunteers for the 2016 national conference, and just as many donations of materials for the kids room including water bottles, snacks, aseptic wipes,  flowers, books, crafts and monetary contributions.

We are pleased to award CAROL CLAUDON a Cure JM Hero Award.