THE DANIELLE A. BARCKETT TYROSINEMIA CLINICAL RESEARCH FUND/NORD

Total Amount in Fund as of 12/21/06:  $34,565.00

Research Grants Program through NORD.Donors may specify that their gift to NORD be used for general research and related activities, or they may restrict their gift to research on a specific disease.

e-mail: orphan@rarediseases.org
The National Organization for Rare Disorders, Inc.

55 Kenosia Avenue,
P.O. Box 1968,
Danbury, CT 06813-1968
tele # (203) 744-0100
fax # (203) 798-2291
Toll-Free: (800) 999-6673

The research fund for Tyrosinemia was started in 1997. The name came about because I wanted the charity to be personal. People really do care and want to help, but you need to start somewhere. I wanted everyone to know that there was a rare disorder called tyrosinemia and a company called Jameson Company did a volleyball tournament. Every since then we had a charity basketball tournament with the NY Giants vs. Kean College Fraternity (really cool), Unico held a dinner and magic show (sold out), and every year my beautician does a cut-a-thon. All the money is sent to NORD in this special fund for Tyrosinemia to help fund research. To this date over $200,000 has been raised. There is currently a grant for research on the behavioral effects of the drug NTBC. Hopefully there will also be a guide for all physicians, libraries, government, etc. that will explain what tyrosinemia is and what the treatments are. Our biggest fundraisers were the Giant basketball game ($8,000.00) & Unico dinner ($17,000.00).   We continue to have fundraisers every year which raise anywhere from $1000.00 - $20,000.00.  My friends & family also donate their United Way contributions from work using donor choice.  If people work for companies who do donor match or United Way, please contribute. This is an easy way. Every little bit helps, especially when you are trying to find a cure for all our children. If we can get all families and friends to raise money for this disorder, there could be a lot of research conducted, so our children can be "normal", health wise. -

Pamela Barckett

You can also donate through the United Way if your company is a sponsor.   

last updated 2/2007