English French German Italian Spanish

Together for Tomorrow: An NBIA Community Campaign

Sept. 1, 2013 – Feb. 28, 2014

We are grateful to everyone who helped make our 2013-2014 Together for Tomorrow NBIA Community Campaign a roaring success.

The campaign raised $243,000, far more than the $135,000 goal we had set. Support came from over 340 individuals and also included a very generous anonymous gift and a corporate donation from our friends at Retrophin, a partner in our NBIA research and a sponsor of our family conference in San Antonio.

Money from the campaign has enabled the board to fund three substantial research grants and to issue a call for a second round of grants this year.

“We are thrilled with the success of the campaign and grateful for the generosity of the NBIA community,” NBIADA Board President Patricia Wood said. “We would like to thank all the donors and volunteers who stepped up to the plate and generously supported this campaign. It’s amazing what we can accomplish if we work together.”

Development Director Amanda Hope encouraged individuals and NBIA families to set up personal fundraising pages through FirstGiving. Those pages helped make the campaign so successful.

A first time NBIA fundraiser, Kristin Phillips, not only raised over $10,000 including matching gifts in just a few days using FirstGiving, she was also instrumental in securing a $150,000 donation from an anonymous donor.

“Also instrumental to the success of the campaign was a matching donation of $25,000 from Retrophin,” Hope said. “Many people learned about the matching grant and were excited about the opportunity to double the impact of their donations.”

Several individuals and families also held fundraising events, dedicating the money raised to the campaign.

NBIADA board members Rick Tifone and Rich Leap collaborated on a golf tournament that brought in $33,000.

Mike Cohn organized a music-related event at the Hoggsbreath Restaurant and Bar in Saint Paul, Minn. Cohn tied his FirstGiving page to a drawing at the Hoggsbreath for a guitar signed by over two dozen country music artists. The guitar was donated by the Jacob Martin Band.

With help from social media volunteers Melissa Woods and Jennifer Cleary, Cohn used Twitter and Facebook to reach out to a broad audience of country music fans. The result was an impressive $6,250 in donations. Winning the guitar was Dr. Horacio Plotkin, chief medical officer at Retrophin. He plans to use the guitar to raise awareness for NBIA by displaying it at the company’s New York City office.

Tanner Young celebrated his 7th In addition, donations from a fund called Tanner’s Troopers set up by his parents, Scott & Niclole Young, contributed to the campaign and together they brought in over $5,300.

Sue Laupola, vice president of the NBIA Disorders Association, said she appreciated each individual donor as well as the employers who contributed matching funds. “The NBIA community was very supportive this year, and we appreciate their donations and the confidence they have in us", she said. birthday with a party and donations earmarked for the campaign.

 

 

Text Size

Donate Now

Sign-up for our Newsletter