Paddling for Peacha with Sharks

Despite fatigue, Mako sharks and diesel spills, Tom Horton raises over $33,000 to fight ALS in the Catalina Classic Paddleboard Race on August 24, 2008. Tom’s mother, Peacha, passed away from ALS in 2005.

By James Klein, Editor

For the second year in a row, Tom Horton contributed to the fight against Lou Gehrig’s Disease by "Paddling for Peacha," as he calls the effort, in the Catalina Classic Paddleboard Race, a 32-mile marathon Tom has competed in four times from the Catalina Isthmus to the Manhattan Beach Pier.

Tom describes how participating in the event and raising money to fight ALS helped him resolve emotions that arose during his mother’s illness: "Well for me, especially this year, I had the sense that it was  the first time I actually did something for her, even though it was in honor of her posthumously....it was such a horrible feeling watching someone you love so much deal with this disease, and there is nothing really you could do for her, other than stand by their side.

A Mako shark that came close to Tom during the race

"So I don’t know if it’s a sense of guilt, I think there is a little bit of that, a sense of guilt and just despair and frustration, and anger. And the fundraising part, especially this year because it was such a successful fundraiser…whatever that burden was just was lifted from my shoulders..."

A Regional Account Director for Genzyme’s Genetics division, Tom raised $26,367 from friends, family, coworkers and other contributors, and received an additional $7,000 from Genzyme’s G.I.V.E. (Genzyme Invests in Volunteer Efforts) program, which provides grants of between $1,000 and $10,000 to charitable organizations for which employees volunteer.

Tom Horton with checks representing donations to the Greater Los Angeles Chapter

Now in its 33^rd year, the Catalina Classic is considered the premier paddleboard race in the world. A field of 96 paddlers competed in the event this year, the winner finishing in a time of five hours and four minutes. Tom finished in the middle of the field, in a time six hours and 36 minutes, demolishing his previous year’s time of eight hours and 13 minutes. At 49 years of age, his performance among world-class paddleboarders is remarkable.

“A lot has to do with the conditions,” Tom explains. “Last year, the conditions were much more difficult, the current was going the wrong way, it was really choppy…and I just wasn’t in as good shape and didn’t prepare as well either. So out of the four years, this year was my best year.”

It was also his best year for fundraising. "I’ve got to acknowledge Genzyme," says Horton. "They really encourage volunteerism with the employees...I think a lot of people contributed more than they would have because of the additional money that Genzyme contributed."

Tom Horton (front row third from left) with his Donkey Crew training group

Jerry Conway, Genzyme’s Vice President, Managed Care, supported Tom Horton as his "ocean escort" during the race. In the September 2008 issue of Genzyme’s genTymes magazine, Conway recalls how from a nearby boat he held a 12-foot pool-skimmer pole with liquid food and drinks for Horton as he paddled, "…witnessing him paddle (by hand, no oars or standard paddles here) his skinny fiberglass board across 32 miles of open Pacific, over Mako sharks and diesel spills, around whales and dolphins …"

Conway also writes about Horton’s fatigue before the race: "Despite having made the error of paddling 7-8 miles in open water to access an island ATM and fishing with us in the sun all day the day before the race (prevailing wisdom dictates you do nothing the day before this Ironman of Paddle Boarding), he got no sleep and set forth cheerily at 5:30 AM on his way towards the starting line."

"It was mayhem," continues Conway. "Escort boats and paddlers all over the place, squid jumping from the surf, sailboats almost running over Tom several times…"

Despite sharks, exhaustion, wild squid and errant sailors, Horton is looking forward to participating in the race next year.

Contributions to Tom Horton's paddleboard fundraiser can be made online at http://www.alsala.org/, or by mail simply write "Paddling for Peacha" in the memo portion of your check to: The ALS Association Greater Los Angeles Chapter, P.O. Box 565, Agoura Hills, CA 91376-0565.

Genzyme's ALS Research

Genzyme has developed an innovative viral approach to delivering neurotrophic factors to the central nervous systems of ALS mice. Senior Scientist James C. Dodge says the new delivery methods may make all the difference.

While others have developed new drugs and treatments for Lou Gehrig’s Disease, Genzyme scientists believe the way those medicines have been administered explains why they have not lived up to some of their promise in clinical trials.

James C. Dodge, Senior Scientist for Genzyme’s ALS research, explains that, “Basically we’ve seen neurotrophic factors slow disease progression in animal models of motor neuron degeneration, however, when they were tested in clinical trials, they failed to provide any form of benefit.  We thought the main reason for this was that they were inadequately delivered to the central nervous system.

“So we’ve come up with a couple of different ways for delivering neurotrophic factors, namely insulin-like growth factor-1, which has shown the most promise thus far…to the central nervous system. And we have tested these delivery strategies in ALS mice and shown that we can provide benefit. 

“The basic idea was to exploit the ventricular system to deliver trophic factors to disease regions of the central nervous system. What we do is inject a virus…into the lateral fourth ventricles of ALS mice and we’ve shown that when we do this, we can significantly improve survival and also improve functional outcome and some pathological markers typically associated with ALS.

“So obviously this is fine for mice, that we can inject the virus into the mouse central nervous system and get delivery of the trophic factor in a small brain; but what we need to do now is test it in a large brain to see if we get the same biodistribution of the trophic factor...”

Dodge says Genzyme is planning to study the system in non-human primates. If the research is successful, it could lead to testing on human ALS patients.

“We think that [IGF-1] has the best shot of working if delivered in a way that gives it sufficient access to the central nervous system,” he concludes. “So we think one of the possible reasons why the other trials have failed is because you’re not getting it to the CNS in adequate amounts."

Dodge’s ALS research at Genzyme doesn’t end there. “I can’t really talk about them, but I’ve done a number of experiments trying to understand the biology, the pathophysiology, underlying ALS, and I’m working on trying to find new targets that are non-neuroprotective targets that actually attack the mechanism of the disease.