Cure JM Foundation Newsletter

DR. LISA RIDER HONORED

Dr. Lisa Rider recently received the 2016 Research and Hope Award for Excellence in Government Research from the Pharmaceutical Research and Manufacturers of America (PhRMA).

Representing biopharmaceutical research companies in the United States, PhRMA selected Rider for her work with Juvenile Myositis (JM).

Dr. Rider was honored for her many accomplishments, including:

• her development of new response criteria used to determine clinical improvement in treatment trials for juvenile and adult myositis
• her work to define subgroups of patients based on myositis autoantibodies, and their associated clinical features and outcomes
• The international development of validated assessments, through her leadership of the International Myositis Assessment and Clinical Studies Group (IMACS), which she has co-led for the past 20 years
• Her partnership with Cure JM to improve the outcomes of children with myositis

Upon being selected for the award, Dr. Rider sent the following message to Cure JM Foundation:

"Thank you to all of you at Cure JM -- for all of your support and all that you do, and all of the kind words today! The accomplishments of recent years truly would not have been possible without YOUR support- really! I am also so inspired by all of the JM patients I meet, many of whom are connected to Cure JM, and by all of your efforts -- that inspiration and hope keeps me continuing to work diligently to make progress in many areas."

GABE MEETS OTHER CURE JM KIDS FOR THE FIRST TIME

On October 8th, Gabe K. met other kids just like him for the first time.

Now three years old, Gabe has been battling Juvenile Myositis for over a year. He had never met another kid with JM. But earlier this month Gabe and his family met other Cure JM kids, teens, and families for the first time at the Walk Strong to Cure JM in Seattle, Washington.

"This was our first time meeting any other families affected by JDM," says Gabe's mom Kalen. "When Gabe was first diagnosed, I felt so alone because of the rarity of this diagnosis. After joining the online Cure JM community, it was a huge relief to have others to be able to relate to. To meet all the other families at the Seattle Walk Strong™ event, was even better!"

30 Cure JM families and over 300 supporter came together to support everyone batting JM -- like Gabe.  

"It was an incredible walk and we are so honored to see the community come out to support our kids," says Walk Chair Julie Shevlin, mom to Tessa. "Meeting the other Cure JM families and supporters and raising over $65,000 for JM research was so rewarding."

Email info@curejm.org to learn more about upcoming events near you, or visit www.curejm.org/events.

NEW ACTIVITES FOR KIDS, TWEENS, TEENS, AND YOUNG ADULTS 

Join over 100 Cure JM Families February 17-19, 2017 in Austin, Texas for the Cure JM National Conference and Fundraising Event at the Lakeway Resort and Spa.

And this year there is even MORE time for patients and siblings to have FUN, connect with others "just like them," and engage in age-appropriate educational sessions.

Nearly 90 families have already RSVP'ed including 70 kids, 70 teens/tweens, and 20 young adults.  We hope you can join us for an unforgettable weekend!

For Kids: Kids can escape to summer camp at its best! Camp JM will be filled with exciting activities for all abilities including relay games, minute-to-win-it competitions, crafts, songs, and much more. Who knows, we may even have a marshmallow fight or two! We'll have enough silly fun to keep everyone smiling all weekend long.

For Tweens/Teens: Teen and Young Adult Transition Care, Support and Self-Advocating (JM Teens Only, 14+), All Teens Workshops - JM Teens and Siblings (Teens Only 14+), Photo, Art, Multimedia, and Siblings Matter (for Teen/Tween siblings of JM patients, NEW).  Teens are also welcome to attend educational sessions about nutrition, JM labs, and other topics of interest.

For Young Adults: Young Adult social time for Young Adult JM patients age 18-30 and significant others.

For the full conference schedule, hotel, and information visit www.curejm.org/austin Contact conference@curejm.org with any questions.

YOUR TIME IS VALUABLE

Your time can make a difference for the special person in your life who is fighting Juvenile Myositis.

Volunteer grant programs are corporate giving programs created to encourage volunteerism in communities where employees live and work.  Through these programs, companies provide monetary grants to organizations where employees, spouses, or retirees volunteer.

Check with your company's HR department to find out more about how your company can support Cure JM.

Many companies offer these programs, including:

• ExxonMobile
• Aetna
• Microsoft
• Dell
• Verizon
• ConocoPhillips
• RealNetworks
• Time Warner and Subsidiaries
• Allstate

To learn more about volunteer opportunities at Cure JM, reply to this message or email info@curejm.org.  

COMBINED FEDERAL CAMPAIGN (CFC)

Employees of the United States federal government can support Cure JM through the workplace giving campaign known as the Combined Federal Campaign (CFC). 

Many CFC campaigns begin in the fall.

During their group's CFC campaign, federal employees will have the opportunity to designate an organization to benefit from their employee contributions.  The CFC includes all federal employees, including civilian employees, military personnel and postal workers.

Help spread the word!  Forward this message to your friends and family and let them know that Cure JM's CFC number is 94746.

Download a flyer and learn more at www.curejm.org/cfc