20 years old! We danced, picnicked and made new plans.
Members of 23 NBIA families from around the country, along with longtime researchers and supporters, helped the NBIA Disorders Association celebrate 20 years of accomplishments and set the tone for the future. It was decidedly hopeful.
Our 20th anniversary celebration included a dinner gala Aug. 6, a family picnic the next day and a meeting with NBIA families, researchers and board members on Aug. 8.
The sold-out gala, held at a Covington hotel, provided sweeping views of the Cincinnati skyline while the 127 guests had the opportunity to dine, dance and donate money to advance our organization’s work in the coming years.
Many thanks to our generous donors and our event’s premier sponsor, Retrophin, Inc., a company working on an NBIA drug. Retrophin donated $25,000 to underwrite the cost of the anniversary weekend.
We also deeply thank Cincinnati City Council Member Kevin Flynn, who spoke at the event about living with a disability and presented a city council resolution declaring it NBIA Disorders Association Day on Aug. 6 in Cincinnati.
Others also freely gave of their time to make the gala a memorable evening. We are grateful to our emcee, Barrett Cohen, and DJ Ron Schumacher, who kept us dancing until midnight.
At Sunday’s picnic, the Northside Knights of Columbus graciously donated and cooked burgers and hotdogs with all of the fixings, including homemade desserts.
On Monday, Aug. 8, we concluded our anniversary weekend with a meeting at which families, researchers and our organization’s board discussed future research priorities.
You can view a photo gallery of gala and picnic pictures on our Facebook page at https://www.facebook.com/NBIADisorders.