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Sep. 30, 2016

TOPIC: Events, Get Involved

Running for Rare Named an Official Charity Partner

Posted by Jennifer Huron

32nd Edition of Skechers Performance Los Angeles Marathon Set for March 19, 2017

skechers-la-marathon-logoWashington, D.C., September 30, 2016—Running for Rare was named an Official Charity Partner of the 2017 Skechers Performance Los Angeles Marathon, it was announced today by the National Organization for Rare Disorders (NORD)®. The race will take place on Sunday, March 19, 2017.

“Running for Rare is thrilled to partner with the 2017 Skechers Performance Los Angeles Marathon as an Official Charity Partner,” said Peter L. Saltonstall, President & CEO of NORD. “The Skechers Performance Los Angeles Marathon provides a dynamic platform for our dedicated charity runners to raise funds and increase awareness for the 1 in 10 Americans with rare diseases. We are looking forward to supporting and celebrating our runners throughout their memorable journeys, and are forever appreciative of their fundraising efforts that directly help others.”

Funds raised by Running for Rare pay for medical testing for individuals who have exhausted all possible avenues to receive a medical diagnosis. These individuals are referred to NORD and its Undiagnosed Program by the National Institutes of Health (NIH) Undiagnosed Diseases Network (UDN).  The NIH UDN is the primary national resource for patients and their physicians who have already tried other alternatives in seeking a diagnosis.

The hallmark of Running for Rare that sets it apart from other charity teams is the Rare Community Partners program, which connects runners with individuals affected by rare diseases. Each partnership creates a relationship between the runner and patient partner, and provides a platform to share stories, raise awareness, find support, and connect with others going through similar challenges.

Runners and Rare Community Partners who are interested in signing up for the Skechers Performance Los Angeles Marathon should visit www.rarediseases.org/runningteam. The runner application deadline is February 28, 2017.

Saltonstall added, “By expanding to Los Angeles, we are returning to a place that helped to put rare diseases in the national spotlight and led to the formation of NORD more than 35 years ago.”

quincy me orphan drug act march

Episode of Quincy M.E.

After reading an article about rare diseases in the Los Angeles Times in the early 1980s, Hollywood writer and producer Maurice Klugman, who suffered from a rare cancer and was the brother of “Quincy M.E.” star Jack Klugman, wrote two episodes of “Quincy M.E.” about the plight of people with rare diseases with no treatment.  The episodes showed the need for incentives to encourage the development of therapies for small patient populations.

In one pivotal scene, 500 extras – all real rare disease patients and their caregivers organized by NORD, several of whom went on to incorporate and form NORD – staged a march on Washington, D.C. (actually filmed in California) to demand support for a real-life bill that was the topic of the episode.  The bill was signed into law as the Orphan Drug Act of 1983, viewed as one of the most successful pieces of legislation ever passed for helping millions of people receive medical treatments that otherwise might not exist.

The Skechers Performance Los Angeles Marathon is the fifth largest marathon in the U.S. and the 11st largest worldwide.  More than 25,000 people participate.  The 26.2-mile race course runs through Los Angeles, West Hollywood, Beverly Hills and Santa Monica, with major landmarks including Dodger Stadium, Walt Disney Concert Hall, Pantages Theater, Hollywood Walk of Fame, TCL Chinese Theater, Rodeo Drive, and the Santa Monica Pier.

The National Organization for Rare Disorders (NORD) is a 501(c)(3) independent charity and the leading independent advocacy organization representing all patients and families affected by rare diseases.

Sign up to receive news and alerts from NORD in your email.

 

 

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