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Cure JM Foundation Newsletter

June 2014

Cure JM's Mission:

Provide support for families coping with Juvenile Myositis

Raise awareness of Juvenile Myositis

And fund research that will ultimately lead to a cure

 

Juvenile Myositis Research that YOU make possible

 

Cure JM Research Centers

 

Myositis Research Studies Needing Volunteers

 

Connect with Cure JM

Facebook      Twitter     LinkedIn

 

Meet the Cure JM Team

 

A Bequest could be the most important charitable gift you'll ever make

Click to learn more about the Cure JM Legacy Club

 

Upcoming Events

Ride in Memory of Cyrus
Saturday June 7
Waltham, M
N

Intel Family Fun Festival
Saturday July 12
Hillsboro, OR

2nd Annual Texas Family Mini-Conference
Saturday July 19
Martindale, TX

Cowboy Brad Concert
Saturday July 26
Estes Park, CO

National Conference
October 3-5
San Jose, CA

Click for more info and to RSVP

 

DONATE NOW

 

 

 

Remembering Kennedy

The Cure JM community is in mourning after learning of 13-year-old Kennedy's passing due to complications of Juvenile Myositis.

Kennedy was a wonderful person, talented and loving, and her family and the world have suffered a great loss.

In Kennedy's honor, there will be a red balloon release on Saturday, June 7th, at noon eastern.  This event is also to honor all of the Cure JM angels who have lost their lives to this devastating disease.

The red balloon symbolizes the joy and carefree life of a child, the one that Juvenile Myositis can take away.  It also symbolizes the courage, resilience and strength that lift us up to fight this disease and find a cure.

When we safely release the red balloons to honor the Cure JM angels, we are sending our love and heartfelt messages.  These precious children are now free to soar through the skies with the red balloons. They are always with us in our hearts.

You are invited to participate in the Red Balloon Release by joining the Facebook Event.

You can also participate by simply writing your message on a red balloon.  No release into the air required.  Photos can be posted to the facebook event or sent to info@curejm.org.  

Click here to learn more about the event and environmental recommendations regarding balloon releases.

Condolence cards for Kennedy’s family can also be sent to: Cure JM, 836 Lynwood Drive, Encinitas, CA, 92024.  Please contact info@curejm.org with any questions.   

 


Thank You, Dad

Dads have always been an important part of Cure JM.  And in honor of Father's Day, Cure JM kids let us know why their dads are special to them:

"Thank you, dad, for doing my shots, taking me to doctors, being patient with me, getting me all of the medicines that I need...but mostly thank you for loving me." - Maya, age 10

"My dad has come to visit me and take care of me at the hospital lots of times."  - Avery, age 6 

"Daddy takes me to the park and we swing.  And he makes me strawberries...good daddy."  - Elia, age 2

"My dad is always there for me and holds my hand everytime I get my port accessed.  He is very kind and loving.  When I don't feel good he is there to comfort me. My dad is the best!" - Riley, age 12

Happy Father's Day, Cure JM dads! 


Advancing Myositis Research

Your generosity has helped fund the first-ever International Myositis Consensus Conference to be held June 10th in Paris, France.   

At the conference, myositis researchers from around the world will come together to develop standardized measures of "improvement" for myositis patients.  

"Without a standard measure of improvement it is more difficult to measure if a particular treatment is effective against myositis, " says Cure JM VP of Research, Amy Gleason. "An international consensus on what improvement means is an important step forward for Juvenile Myositis research."  

A standard measurement for myositis improvement is expected to improve collaboration among myositis researchers and help advance myositis research.    

Thank you!  Because of you, Juvenile Myositis research is taking a big step forward.    

 


You Can Bring Together Children Battling Juvenile Myositis

In October, patients, families, doctors and researchers will come together at the Cure JM National Conference in San Jose, CA.

While the families and doctors learn about Juvenile Myositis, the children will enjoy a Kids' Fun Camp. 

At the Kids' Fun Camp, the children will delight in art, music, entertainment and new friendships.

This experience can be life-changing for the kids.  

Many children who attend have never before met another child also battling Juvenile Myositis.  Many feel alone and misunderstood.  At home, often times their medical treatments won't allow them to participate in school, parties or other social events.  

But, with your help, at the Cure JM National Conference they can come together with other kids who understand them.  

You can give these kids a day that they will never forget.  They will have fun, laugh and make memories.  And they will form new friendships that will help get them through the tough times.

A sponsorship of just $2,000 will allow over 50 children to attend the Kids' Fun Camp.  

Companies, organizations or individuals can sponsor the Cure JM conference and make a difference in the lives of children battling Juvenile Myositis.

In-kind sponsorships also available.  To learn more, contact Shannon Malloy at (760) 487-1079 or shannon.malloy@curejm.org  

 


Cure JM National Conference is "Magical" for This Family

This October, come together with the Cure JM community for the 8th annual Cure JM National Educational Conference and Fundraising Event. 

Jackie, mother of a child with JM, calls the conference "magical."

“Every time we participate in a Cure JM event, it's been magical for us in many ways," says Jackie.  "My child makes new friends, who can relate to the same things he is experiencing.  He gains more confidence and he feels less alone knowing that there are others just like him.  My husband and I learned about the latest studies and treatment from leading doctors and researchers.” 

And this year's event has even more of what you asked for:

  • A welcome reception and casual meet-and-greet
  • Intimate breakout sessions about coping with real-life issues facing JM families
  • An educational forum with top JM experts
  • Special sessions just for Grandparents, Dads, Kids, Teens & Tweens and more
  • Casual social time 
  • A recognition dinner
  • The San Jose Rock 'n' Roll Half Marathon and 10k
  • And much, much more! 

Click to view the complete schedule & session descriptions.

Don't delay!  Register now.  

Questions?  Want to help from home?

contact info@curejm.org

 


Cure JM Honored as Top Nonprofit for 4th Year in a Row

Cure JM has been honored as a Top Nonprofit for the fourth year in a row by GreatNonprofits, the leading provider of user reviews about nonprofit organizations.

Less than 1% of eligible nonprofits have received this distinction. 

"We are excited to be named a 2014 Top-Rated Nonprofit," says Mitali Dave, President of Cure JM's Board of Directors.  "Thanks to our supporters, we will accomplish a lot this year, including funding up to four new Juvenile Myositis research grants."

The Top-Rated Nonprofit award was based on the large number of positive reviews that Cure JM received – reviews written by volunteers, donors and families. 

One reviewer wrote:  "Cure JM Foundation has been so helpful, beyond measure.  They open the doors of hope and help to anyone affected by this terrible disease."

“Savvy donors want to see the impact of their donations more than ever,” said Perla Ni, CEO of GreatNonprofits, “People with direct experience with Cure JM have voted that this organization is making a real difference.”

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