Generation 2000 Fund Raising Award
Presented by Barbara Boyle to the Fiore/Smrtnik Family
Text of Presentation by Barbara Boyle:
It is a great honor for me to present the Generation 2000 Award this evening. This award is very special to me because the fund raising program that it represents means hope to our HD families.
I remember when we kicked off the first phase of Generation 2000 in 1999. We wanted to raise $500,000 in 18 months but you surprised us. With your help, we raised $2.7 million. I can’t tell you what a tremendous impact that made on our research program. But as one of our HDSA Coalition researchers is so fond of saying “More is better!”, so we then decided to launch phase 2 of Generation 2000 to raise $25 million by the end of 2006.
The response has been tremendous and the commitment by families impressive. One family in particular has created a signature event that in just five years has raised almost $500,000. Mike and Nancy Fiore are determined to find the answers to the HD puzzle for their two children. Mark is already exhibiting signs of HD while Trisha has tested positive but remains asymptomatic. This is a very personal battle and one which the Fiore Family does not want to lose. In so many ways, the Fiore Family represents every HD family in the world. They want therapies now and they want a cure.
They began their golf event in order to support the research being conducted by HDSA Coalition for the Cure investigator Rick Morimoto at Northwestern University in Chicago. The following year, they were able to enlist more friends and family and were able to raise enough to support not only Dr. Morimoto but a piece of his HD team. Each year, the event has grown and now averages $100,000 per year.
This past year, the Fiore Family decided to split the proceeds between Dr. Morimoto’s research and the new HDSA Center of Excellence at Rush University Medical Center. They know that HDSA Centers of Excellence provide opportunities for families to participate in the clinical trials that may bring effective therapies in the near future. And they know that HDSA Centers of Excellence deliver outstanding medical and social services to HD families.
The Fiore Family Golf Tournament is more than just a sports and fund raising event. It is also an educational opportunity and a way to build awareness about HD in their community. It is also a tangible means for their friends and family members to join with the Fiores in their fight against HD.
For their dedication and commitment to HDSA and for their steadfast belief in a future free of HD, I proudly present the Generation 20000 Award to the Fiore Family.