September, 2017
In the past five years, Retrophin Inc., a biopharmaceutical company in San Diego, has been a big NBIA Disorders Association donor, giving $175,000 to support family conferences and scientific gatherings. But employees of the company, which is conducting a clinical trial on an NBIA drug, also have shown their support on a personal level.
At our Ninth International Family Conference in Deerfield, Ill., this June, homemade teddy bears were given to affected NBIA individuals. A month earlier, the Retrophin employees joined the growing RARE Bear Army to stuff and finish making the bears started by other volunteers as gifts for NBIA-affected families at the conference. The Retrophin employees completed 42 Rare Bears in this “all hands on deck” effort that included CEO Steve Aselage.
As you can see in the accompanying photo, the RARE Bears, made specifically for each person, were greatly appreciated! The Retrophin team tagged, packaged and shipped the bears to the conference hotel to be distributed at the family picnic.
Later that same month, Retrophin was one of four sponsors in the BIO Run for Health 5K in San Diego. Thirty enthusiastic Retrophin team members took part in the June 19 run, raising $600 for our organization and showing their spirit by sporting Hawaiian shirts, leis and, even, grass skirts. They all completed the 5K run in less than an hour, with a first place finish in the female 1-to-29 age group by Jenna Swan, a Retrophin patient care manager. She crossed the finish line after 22 minutes and 36 seconds.
“These Retrophin team members felt inspired to go the extra mile to help fund your advocacy group so that you can continue to raise awareness about the work you do to advance the discovery, development and delivery of new treatments for patients with rare diseases,” said Tricia Sterling, Retrophin’s executive director of patient care.
The company is developing drugs for rare diseases, including PKAN, the most common form of NBIA. The company has sponsored conferences and events on behalf of the NBIA Disorders Association since 2013.
It also provided funding for early-career researchers around the world to attend the 6th International Symposium on NBIA & Related Disorders in April 2017 at Skamania Lodge, Stevenson, Wash., and donated $122,000 to the NBIA Alliance for the NBIA International Patient Registry and Biobank in March.
The Alliance is an umbrella organization of NBIA patient groups worldwide, including the NBIA Disorders Association in the United States. The ongoing generosity of Retrophin and its employees helps us continue our work, supporting families, raising awareness of NBIA and moving research toward a cure.
