ALS Foundation honors memory of Natick man
 

ALS Foundation honors memory of Natick man
By Charlie Breitrose/Staff writer
Thu Aug 28, 2008, 07:06 PM EDT

NATICK -
As Frankie Carlson lost more and more mobility due to ALS, he realized he was lucky to have people and money to help him live his daily life while many others suffering from the disease do not.

Carlson learned he had ALS, also known as Lou Gehrig’s Disease, when he was 27 and less than a year later, in 2001, he started the ALS Foundation.

He died a month after his 30th birthday, but his mother Sheila and a group of his friends from Natick have continued the work of the foundation.

"Frankie decided he needed to raise money, totally aside from what other foundations raise for research to find a cure for ALS," Sheila said. "What is forgotten, what gets left behind, is funds to assist patients with daily living."

Carlson was very active in high school and became a highly rated fencer, going on trips around the country and to Europe with the U.S. junior national fencing team, Sheila said.

He attended the University of Pennsylvania and then pursued a career in sales, first with the Bernardi auto dealerships and later with Imark Communications. When the disease took hold, he slowly lost mobility, his mother recalls.

"First he lost use of his legs, then his arms, and then his back and neck; so he lost the ability to be mobile," Sheila said. "Then he lost ability to eat, so he had to have an eating tube. His voice was very limited when he died."

One of the reasons Carlson started the foundation was to keep himself active, at least mentally.

"The brain remains in tact," Sheila said. "That is the reason why they call it the cruelest disease - you are still as vital mentally as if you were healthy, but you totally lose use of your body."

As the disease progresses, ALS patients lose the use of their legs, arms, and other parts of their body, Sheila said, so they must use a wheelchair to get around. Often ramps or chair lifts need to be installed to enable ALS patients to get around their homes.

"There is a tremendous need for equipment with ALS patients which is a not covered by insurance," Sheila said. "It bothered him that insurance didn’t pay for so many things that really kept the dignity in peoples lives. Some people are unable to get out of bed or out of house because couldn’t afford to."

All the money raised by the ALS Foundation goes to the Massachusetts chapter of the ALS Association to help patients with costs of equipment and other needs. Over the last three years the foundation has raised $150,000, Sheila said.

"Case workers work with patients across the state on a financial need basis," Sheila said. "They use our funds, they can draw funds to have ramps built, to install chair lifts, handicap bathrooms, handicap toilets.

"We have made an impact in Massachusetts. I’m proud of it."

The foundation has provided much help but it is a small operation, Sheila said.

"We have five board members, mostly Frankie’s very dedicated friends that have worked long hours and really do phenomenal work," Sheila said.

The major fund-raising event each year is the Bowl for Life event at Boston’s Lucky Strike Lanes. This year’s event will be on Saturday, Sept. 13 from noon to 5 p.m.

"The first year we raised over $25,000, last year $35,000 and this year we are hoping to raise $50,000," Sheila said.

People who remember Frankie, a 1992 Natick High School graduate, turn up in droves for the event, Sheila said.

"We get a lot of Natick people. Frankie grew up in Natick, we’re a Natick family," Sheila said. "Natick’s a tight community and I am amazed by the number of people who knew Frankie in school or from the neighborhood who knew Frankie.

"Each year we get at least one bus load come out."

Tickets to the bowling event cost $35, which includes bowling for the day, food from the buffet and a T-shirt. Tickets can be purchased on the ALS Foundation’s Web site, www.alsfoundation.org, or at Lucky Strike on the day of the event. Lucky Strike Lanes is located at 145 Ipswich St., in Boston, near Fenway.

(Charlie Breitrose can be reached at 508-626-3964 or cbreitro@cnc.com.)


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