Cure JM Foundation Newsletter

March 2016

DONATE NOW

Cure JM's 9th National Conference and Fundraising Event in St. Pete Beach, FL

Cure JM Medical Advisory Committee members Dr. Lauren Pachman, Dr. Lisa Rider, Dr. Susan Kim, and Dr. Adam Huber answer family questions during the General Session.

In January, Cure JM held it's 9th National Family Educational Conference and Fundraising Event.

Over 85 Cure JM families came together with Juvenile Myositis experts from across North America for the weekend.

Families enjoyed time to connect with other families as well as educational sessions on a wide-variety of topics related to Juvenile Myositis research and care.

Families also had the opportunity to provide input in three different sessions where researchers needed to hear directly from families.

And a special thank you to the dedicated volunteers who made the Cure JM Conference possible. It would not have been possible without the sacrifice and hard work of each volunteer.

View the complete Conference Recap here.

Conference Recap from Jim Minow

Jim Minow, newly-named Cure JM Executive Director, pictured here speaking during the Conference's General Session.

As you recently heard, Cure JM is excited to announce it's first-ever Executive Director, Jim Minow.

Jim brings over 20 years of non-profit experience to Cure JM and has experience bringing new cures to other rare diseases.

"We're excited to have Jim lead the fight for better and more effective treatments at Cure JM," says Cure JM co-founder Shari Hume. "And with Jim's passion to "make things happen, I'm confident that you'll see real and faster progress toward more effective treatments."

Read Jim Minow's complete Conference Recap here.

Save the Date, Y'all!

The next Cure JM National Conference and Fundraising Event will be in Austin, Texas, February 17-19, 2017.

Cure JM's National Conference is Coming to Austin, Texas, February 17-19, 2017.

Join fellow Cure JM families from around the world in Austin, Texas for a spirited weekend of knowledge, sharing, and new friendships.

The weekend will be focused on our unified effort to find a cure for Juvenile Myositis and improve the lives of families affected by Juvenile Myositis.

All patients, caregivers, and extended family of those coping with JM (including Juvenile Dermatomyositis and Juvenile Polymyositis) are invited to attend.

The Conference will include:

NEW! A fun family-friendly Cure JM Walk to raise funds for JM research.
NEW! More fun activities for teens and young adults to enjoy while connecting with each other.
Intimate Break-out Sessions about coping with real life issues facing JM patients, families and caregivers.
An Educational Forum with Juvenile Myositis Researchers.
The Austin Marathon and Half Marathon, where Cure JM runners and walkers will help raise funds for JM research.

More information is coming soon.

The Reece Family's First Cure JM Conference

Kid's Camp

Katelyn enjoying the Kids' Fun Camp activities and all of the new friends she met.

The Reece family celebrates the collective achievements of the Cure JM community at the Cure JM Family Recognition Dinner

Just 11 months after their daughter was diagnosed with JM, the Reece family attended the Cure JM conference in January.

The Cure JM Conference offered Billy and Laura the chance to meet over 100 other parents and grandparents of children with JM.

Katelyn also met dozens of kids her own age.

"I am so glad we attended. We left the conference feeling more connected, informed, and hopeful for the first time since Katelyn's diagnosis," Laura explained.

"It was so nice hearing other families' paths on this journey and sharing stories and experiences with one another," said Billy.

At the Cure JM National Conference and Fundraising Event, Laura and Billy attended educational sessions about how to care for their JM child and family, including a session just for newly diagnosed families.

"We're just a regular family, but we're going to make a difference however we can, says Laura. "Meeting the other families and physicians who are fighting for a cure was so uplifting."

Kids' Fun Camp at Cure JM's National Conference

Over 70 kids enjoyed the supervised Kids' Fun Camp, having fun while making new friends who understand them.

This year's Kids Fun Camp featured a Star Wars theme!

Over 70 Cure JM kids and siblings, age 3-10, came together for a Star Wars-Themed Kids' Fun Camp.

The camp was taught by a team of elementary school teachers who led the kids in a fun-filled day of Star Wars activities.

The day was capped off with a visit from real-life Star Wars Characters. The children were all surprised when the Star Wars Characters showed up!

"It was AWESOME," said Tristan, age 5. "Totally epic!"

For the parents -- and many of the researchers -- one highlight of the weekend was watching the kids perform a song and dance to the inspirational song "Fight Song" by Rachel Platten.

View the performance here

Teen and Tween Highlights

Over 50 teens and tweens came together for the weekend, many participating in the one-day Teen and Tween Photography Workshop

Over 3 dozen teens, tweens and young adults also came together to participate in their own events including:

A Transition to Adult Care Workshop
A Teen Photography Workshop
A Teen-Only Session where teens could connect and share with each other

"Teens have their own distinct needs," says Kristine Alderfer, Cure JM Board Member and adviser to the Teen Council. "Cure JM is working to increase the services we offer for teens who will soon be transitioning to independent management of their health."

Look for more information coming soon on Cure JM's teen education and support initiatives.

Race Highlights from St. Pete Beach, Florida

8 year-old JM warrior Bradley crosses the finish line in the 5k race. Congratulations, Bradley!.

Over 300 runners, walkers, and volunteers had fun and raised funds for JM research at the Walgreens St. Pete Beach Classic.

Nearly 300 Cure JM runners and race volunteers braved both sun and rain to represent Cure JM in the Walgreens St. Pete Beach Classic.

Cure JM families participated in the Kids' Fun Run, 5k, 10k, and half-marathon to have fun, raise funds for research, and spread awareness of Juvenile Myositis.

Families had fun racing and empowered themselves by raising funds to make JM research possible.

The National Conference is one of the biggest fundraisers of the year -- Cure JM families raised over $600,000 for JM research over the last few months!

Families participated by raising funds as part of the National Conference, participating in the Holiday Challenge, or holding an event in their hometown.

"JM research is made possible by Cure JM families stepping forward to get involved," says Cure JM Chairman Rhonda McKeever. "We are grateful to every family that raised funds."

Call to Action from Cure JM Chairman Rhonda McKeever

Cure JM Families like the Galvins make JM research possible by getting involved and hosting a lemonade stand to benefit Cure JM.

Cure JM Families,

As we conclude the 2016 national conference, I am asking for your help.

As families heard at this year's conference, the participation of each family is crucial to moving JM research forward.

Cure JM was created by just a few JM families taking the courageous initiative to create this organization in 2003. Since 2003, through the collective efforts of the Cure JM community, we have made incredible progress with JM research, have fostered infinite acts of kindness and support for JM families, and have created broader JM awareness, particularly in the medical community.

Your action now is critical to moving research forward in 2016. So, I ask all of you, how can you help or who do you know who can help?

Sincerely,

Rhonda McKeever

Chairman, Cure JM Foundation

Cure JM National Conference

Cure JM’s 10th National Conference
February 17-19, 2017
Austin, TX

Upcoming Events

Chicago Meet & Greet with Cure JM Executive Director Jim Minow
Sunday, April 3, 2016
Hoffman Estates, IL

Parasol Parade Walk to Benefit Cure JM
Saturday, April 30, 2016
Warsaw, IN

Washington Walk for Kids Kickoff Party
Sunday, May 15, 2016
Woodinville, WA

2nd Annual Gracey Fest
Sunday, May 22, 2016
Mount Washington, KY

3rd Annual Cowboy Brad Concert for Cure JM
Saturday, June 25, 2016
Estes Park, CO