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NBIA Corporate Support - Retrophin


We are pleased to recognize Retrophin, a biopharmaceutical company focused on the discovery and development of drugs for the treatment of catastrophic diseases, based in New York, NY, for their ongoing support of the NBIA Disorders Association.

For the second year, Retrophin is supporting our Together for Tomorrow Action Initiative with a very generous $35,000 matching gift. We have until February 28th to take advantage of this opportunity to double the impact of donations. Last year their gift of $25,000 was instrumental to the success of the campaign.

The company will also once again be a major sponsor of our 2015 International Family Conference that will be held in Minneapolis, Minnesota. They also supported our 2013 conference in San Antonio, Texas.

In addition to the corporate office, Retrophin employees have also raised funds for the organization. Many employees supported our campaign in 2014 directly through our FirstGiving platform. One of these employees was Dr. Horacio Plotkin, chief medical officer at Retrophin. Dr. Plotkin won a guitar in a drawing held by Mike Cohn, NBIA Volunteer Director of Adult Programs and active fundraiser for the organization. The Jacob Martin Band donated the guitar, signed by over two dozen country music artists, to the organization. Dr. Plotkin says he plans to use the guitar to raise awareness for NBIA by displaying it at the company’s New York City office.

To date, Retrophin employees have raised more than $5,000 for NBIA. Combined with the company’s matching gift for the past two years and 2013 and 2015 conference sponsorships, the total amount has climbed to over $105,000 in just three years.

The NBIA Disorders Association is extremely grateful to Retrophin and its employees for their continued support, kindness and generosity.

NBIA Community Support

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Quest Diagnostics based in Madison, N.J., and its many employees have been avid NBIA supporters for the past seven years.

The employees have worked tirelessly to help spread awareness of NBIA and raise money for research, causes close to the heart of their colleague, Rich Leap of Haymarket, Va. He has worked at Quest for the past 10 years, and his daughter, Brittany, was diagnosed with NBIA seven years ago.

The company is the major sponsor of the “Queen Bee” golf marathons each year in honor of Brittany and the Chantilly, Va., office holds an annual fundraiser to celebrate her birthday. Quest Diagnostics also has added the NBIA Disorders Association to its list of charities for matching employee donations. Aside from sponsoring events, employees have supported other fundraisers held by the Leap family, such as, “Queen Bee” Bingo and various raffles.

Employees have helped support the association in other ways as well. At the 2011 NBIA Family conference in St. Charles, Mo., nurse phlebotomists from Quest volunteered to draw blood samples for a study on acanthocytes, a type of red blood cells.

The child care room at the conference also was manned by Quest volunteers who played games, read stories and made sure that children with NBIA and their siblings were happy and safe. This enabled their parents to be comfortable attending sessions to learn more about NBIA, current research and how to better help their loved ones.

To date, Quest employees have raised more than $90,000 for NBIA. With the company’s matching donation program, the amount has climbed to $130,000.  

The NBIA Disorders Association is extremely grateful to Quest Diagnostics and its employees for their continued support, kindness and generosity.

The association relies heavily on community support to help further its mission of finding a treatment and, ultimately, a cure for NBIA. Please check with your human resources department to see if your company has a matching program. It’s a wonderful way to stretch those donations.


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