Adding up the miles for neurofibromatosis

In 2007, the 1,800 active members of the NF Marathon Team raised approximately $1.5 million for the New York-based Children’s Tumor Foundation – the national neurofibromatosis organization, said Team Director Steve Kendra. Since 2004, when Kendra became director, fundraising has increased almost fivefold.

And the investment in research is paying off.

CTF’s drug discovery initiative is pumping drugs into the pipeline to be tested on populations of mice that represent the various manifestations of NF. The goal is “to get drugs to the point where pharmaceutical companies would be interested in taking it further into a real clinical trial,” Kendra said.

The most exciting news to date concerns the cholesterol-reducing drug Lovastatin, manufactured by Merck.

“They’ve determined (in mice) that Lovastatin reverses the learning disabilities brought on by NF,” Kendra said.

Learning disabilities affect about 60 percent of people with some form of NF. A Phase 2 clinical trial of Lovastatin to address learning disabilities is under way with NF patients, according to Kendra.

Meanwhile, Kendra has 31 fundraising events planned for 2008, including marathons, triathlons and other endurance contests.

For Kendra, like Dominguez, the fight against NF is personal.

Kendra’s daughter, Arianna, has NF and has undergone 14 surgeries in 12 years. She has been surgery-free for 16 months.

Dominguez’s son Eric has so far avoided extensive surgery. “I would hope that before Eric had any major problems, they’d have something they could do about it,” Dominguez said.

For more information about NF, its diagnosis and treatment, visit www.ctf.org.

For information regarding Jose Dominguez’s Run for Eric, visit www.active.com/donate/nflasvegas2007/RunForEric.