Hunter Ozmer lost her life in this world on January 2, 2008 to Niemann-Pick Disease, but her remarkable spirit and influence lives on through her family, friends and the “Hunter’s Hope” Memorial Golf Tournament.
This Friday marks the 13th annual tournament and auction fundraiser to be held at Hanging Rock Golf Club. The golf tournament, dinner and auction will raise funds for research into the cause and treatments for Niemann-Pick Disease (NPD).
Proceeds from the event will benefit the National Niemann-Pick Disease Foundation, an international, voluntary, 501(c)(3) organization committed to finding a cure for NPD.
The illness is a progressive disease that causes neurological decline, respiratory difficulties, loss of motor skills and early death.
Ozmer was diagnosed with NPD at the age of two. Initially doctors told her parents, Annette and Hunt Ozmer, that their daughter would not live to see her third birthday, but she defied the odds and didn’t show any neurological symptoms until age 10. She had type C, which prevented her body from metabolizing cholesterol and affected her liver, brain and spleen. Only 1,700 cases of NPD have been diagnosed worldwide, according to the NPD Foundation.
During her lifetime, Ozmer dedicated herself to helping future NPD patients. While her parents served on the board for the National Niemann-Pick Disease Foundation (NNPDF), Ozmer raised awareness locally, organizing fundraisers just after she began experiencing neurological symptoms of NPD.
Hunt Ozmer is unwavering in his faith and certain that he will one day be reunited with his precious daughter. But, when asked what he misses most about her today, he said, “Probably her smile and those special eyes which speak volumes. You see with Niemann-Pick Disease Type C, the kids lose the ability to speak, so at the end we couldn’t truly understand her innermost thoughts. But those beautiful blue eyes could tell the story. I know for Annette, the fact that she couldn’t speak at the end of her life was very difficult but those eyes could talk and sometimes sparkle.”
The $100 Hunter’s Hope tournament package includes golf cart, greens fee, awards dinner, a special Hunter’s Hope golf shirt, and competitive awards. Four-person teams may be all-men, all-women, or co-ed. Single entrants will be placed with a team.
The tournament begins with a shotgun start at 1:00 p.m. Friday, with the awards dinner and auction beginning at 6:00 p.m. under tents next to the clubhouse.
Non-golfers are also invited to come and participate in the auction. Auction items will include artwork, pottery, furniture, jewelry and sports memorabilia items.
Entry forms can be obtained from www.huntershopememorial.com, by emailing [email protected], or by calling 540-774-0944.
The National Niemann-Pick Disease Foundation was established in 1992, when six families from across the nation joined together to raise money for family support services and research. Since then, the Foundation’s membership has grown to over 350 families, and over $4.1 million has been applied toward research. As a result of this research, the gene responsible for Niemann-Pick Disease has been identified, and experimental therapies are being tested.
The NNPDF provides education and awareness to a broad international audience. To further support families dealing with the day-to-day issues of caring for a family member with a terminal illness, the Foundation offers an annual Family Support and Medical Conference, which was held recently in Seattle, Washington.
Family-sponsored fundraisers such as the Hunter’s Hope event support the research essential to winning the battle against Niemann-Pick Disease. The Ozmers, like many families across the country affected by NPD, work toward the day when no more lives will be lost due to NPD.
For more information about the National Niemann-Pick Disease Foundation, visit www.nnpdf.org or contact the NNPDF at 920-563-0930.
By Pam Rickard [email protected]
