February 3, 2003

Chicago Friends of Diamond Blackfan Anemia Foundation
Hundreds Boogie Down for Local Children at “The Disco Ball”

Highland Park, IL- On February 1, 2003, over 300 guests attended the “The Disco Ball” held by the Chicago Friends of Diamond Blackfan Anemia and PepsiAmericas. Over $100,000 was raised to support research for this rare blood disorder. The event took place at the Highland Park Country Club.

Special guest emcee, Dick Biondi, of Magic 104.3 got the party started. Guests got into the spirit donning authentic costumes from the period. One highlight of the evening was the performance of The Village People, six board members who really got into the spirit. For those who needed a break from the music, there was a silent auction and raffle. Complimentary drinks were provided through the generosity of many donors.

The Chicago Friends of Diamond Blackfan Anemia is a local group that raises funds for the national arm – Diamond Blackfan Anemia Foundation, Inc. (DBAF). Diamond Blackfan Anemia (DBA) is a severe anemia of infancy and childhood resulting from the failure of the bone marrow to produce life sustaining red blood cells. Currently, there are approximately 350 children and young adults in the United States and Canada, and roughly 700 people worldwide, who have been diagnosed with this disease. Due to the rarity of DBA, little is known about the cause and effective treatment. Today, treatment is accomplished through daily use of steroids, for some, or when steroids are ineffective or toxic, by frequent transfusions of red blood cells. Spontaneous remissions have occurred in a small number of cases, however, there is no known cure.

The Foundation (DBAF) was founded in 1994 by a group of concerned families who have children diagnosed with this disorder. The Foundation was established to help raise funds directly for researching a cure. All the money raised for research is from local fundraisers organized by the families and friends of those afflicted with the disease, one hundred percent (100%) of which goes directly toward research.

Here in Chicago we raise funds to honor three children with DBA. Natalie Hianik, 5, of Glencoe, was born with DBA and is currently receiving blood transfusions every three weeks. Natalie’s condition has also affected her white cell production and she is frequently hospitalized for her inability to fight off infections. Highland Park resident Daniel Wagner, 5, and Nicholas Marmitt, 3, of Geneva have been responsive to steroid treatment.
“Our hope is that through advanced research, we will find better treatments for this life-threatening disease to help these and the other children with DBA,” said Iren Hianik, Natalie’s mother.

“This was by far the most fun of our three events. It was amazing to see how participatory all the guests were. We’ve already received requests for the next fundraiser,” comments Mike Wagner, Dan’s father.

For more information or to make a donation, please call the DBA hotline at 847-604-4117.

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