Holiday flights raise money for kids with nerve disorder

Posted: Tuesday, December 12, 2000

Juneau residents have an opportunity to view holiday light displays as Santa will see them and help Alaska kids with neurofibromatosis at the same time.

Since 1991, Coastal Helicopters has provided Christmas flights at approximate reindeer height. This year's flights will be offered from 4 to 7 p.m. Saturday at the north wing of the Juneau Airport. A $25 donation is required and flights are on a first-come, first-served basis. If rain, wind or whiteout conditions are a problem on Saturday, Coastal will offer the rides at the same time Sunday. Rides last about 10 minutes, said coordinator Aral Loken.

"We encourage people living in the valley to put up their outdoor lights and have them lighted that day, as it is really cool to see them from the air," Loken said.

Helping Loken coordinate is Raija Wilson, who became involved in the cause because she works with Loken, she said. Loken's son Kenny, 15, a high school sophomore, underwent surgery on his brain and eye sockets recently in Seattle.

"Neurofibromatosis is a genetic disorder, a disease of the nerve endings, so it can affect the eyes," Wilson said. "No other members of the Loken family have it."

Because her son goes to Boy Scouts and video club with Kenny, she has become knowledgeable about the disorder, she said. Several families in Juneau are affected by the disease.

Neurofibromatosis, called NF, causes tumors to grow along nerves throughout the body and can affect the development of bones and skin.

NF is not rare; it is more prevalent than cystic fibrosis, Tay-Sachs disease and Huntington's disease combined.

NF affects 100,000 Americans, or one in every 4,000 births.

If one parent has NF, each child has a 50 percent chance of carrying it.

NF is usually diagnosed soon after birth or during childhood. Fifty percent of the cases have no family history of the disorder.

Coastal is donating the fund-raising flights. Petro Marine and Coastal Fuel are donating fuel. SuperBear, Alaska Seaplane Service and Rainforest Tours also pitch in to make the flights run smoothly.

Residents who wish to donate directly to NF research may dial up www.NF.org. For more details about the helicopter rides, call 789-4419. The National Neurofibromatosis Foundation can be reached at (800) 323-7938.

Ann Chandonnet can be reached at achandonnet@juneauem-pire.com.



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