Share/Bookmark

Cure JM Foundation Press Releases

FOR IMMEDIATE RELEASE

LOCAL MOTORCYCLE CLUB RIDES IN MEMORY OF HILLSBORO BOY

PORTLAND, OR   (August 5, 2013)  –  Last summer local 10-year old Mason Smedley lost his life-long battle with the rare disease Juvenile Myositis. Mason will be remembered on Saturday August 24th with a memorial motorcycle ride through Portland.

"Mason was diagnosed with Juvenile Myositis when he was 17 months old," says his mother. "He struggled with the disease most of his life."

Juvenile Myositis is a rare and incurable autoimmune disease that can cause severe muscle weakness, fatigue, organ failure and even lead to death. 17,000 children are battling Juvenile Myositis in the U.S. alone. Juvenile Myositis is often treated with potent corticosteroids, IV treatments, immunosuppressants and chemotherapy that can cause severe medical complications. While some patients enter into remission, many children remain on these medications permanently.

Two local motorcycle enthusiasts were inspired by Mason's battle. Tony Weber and Brian Launer, members of a local motorcycle club, joined forces to honor Mason's courageous battle. "One fun ride can change a child's life," says Launer.

100% of proceeds go to Cure JM Foundation, a nonprofit organization dedicated to finding a cure for Juvenile Myositis (JM).

The 2nd Annual Mason Smedley Memorial Ride is Saturday August 24. The ride starts at MotoCorsa at 170 NW Wilson Street, Portland, at 8am. The ride finishes at Beaverton Motorcycles, 10389 Cascade Blvd., Tigard, around 3:00pm. Anyone is encouraged to come out to Beaverton Motorcycles for food, fun & extra raffle tickets sales at 3:00PM. The raffle starts at 3:30PM.

"Mason had so many gifts that he shared with everyone," says Rhonda McKeever, Chairman of Cure JM Foundation. "Mason's smile always lit up a room, and his sense of humor, his charm and his warmth instantly made everyone love him. While Mason unfortunately lost his battle with JM last June, Mason's heroic spirit will live on, especially in the thousands of children with JM and their families."

Despite the rarity of JM, over 400 JM families across the world released red balloons the Saturday after his passing, all in honor of Mason. Balloons were released in Australia, Ireland, in the UK and all over the United States. Every one of these families was inspired by Mason and his great courage in the face of adversity.

Says Mason's mother, "He fought a very courageous, brave battle with JM, but lost his fight last summer. We will continue to raise money and awareness for this horrible disease in hopes that a cure will be found so no other child will have to suffer like Mason."

###

About Cure JM

Cure JM Foundation is a volunteer-managed 501(c)(3) nonprofit organization dedicated to finding a cure for Juvenile Myositis (JM). The Cure JM mission is to provide support for families coping with JM, raise awareness of JM, and fund research that will ultimately lead to a cure. Cure JM is the only organization that solely supports JM research and JM families. Through nationwide grassroots fundraising efforts, Cure JM Foundation has raised over $5 million for JM research. These funds have been used to help establish JM research centers at both Ann & Robert H. Lurie Children’s Hospital of Chicago and George Washington University in Washington, D.C. In addition, Cure JM Foundation has funded a wide range of genetic and JM treatment studies, as well as fellowships. Our goal is to never, ever let another child suffer with Juvenile Myositis. With your help, we believe it's a goal that's well within our reach. For more information on Cure JM go to www.curejm.org.

For More Information

About the Mason Smedley Memorial Ride:

  • Tony Weber at
  • Brian Launer at

About Juvenile Myositis:

  • Contact Rhonda McKeever, chairman of Cure JM Foundation, at 203-832-5001 or .

###