Ben's Run - different kind of sports (1 Viewer)

*aca*

Senior Member
Jul 15, 2002
869
#1
Before reading my post, please check out the article....

http://www.azcentral.com/community/...ensrun16Z8.html


Chris Fiscus
The Arizona Republic
Oct. 16, 2003 12:00 AM


NORTHEAST VALLEY - Mike McCollow of GEAR running store in Scottsdale was stunned when "Ben's Run" organizers called him last year asking to help raise funds and awareness for a rare childhood blood disease: histiocytosis.

McCollow's 8-year-old daughter, just like Ahwatukee Foothills toddler Ben Stokman of "Ben's Run," was born with the disease.

"It almost floored me," McCollow said. "It is such a rare disease I almost thought it was a message from God or something."

About 1,000 people turned out last year for "Ben's Run" to help raise money for Ben's fight against histiocytosis. About $65,000 was raised for research. This year's race is scheduled for Nov. 22, and Ben's family hopes for an even bigger showing.
McCollow's GEAR store is a key sponsor, helping with everything from race numbers to the race Web site to a kickoff party at the store on Oct. 24, the day after Ben turns 2.

The race, and raising awareness for histiocytosis, is just as important this year, the family says, especially after Ben's disease recently flared up.

His large brain tumors had stopped growing. His lung and kidney lesions cleared up, and his scalp lesions went away. But he's back in Phoenix Children's Hospital this week for more chemotherapy.

"We thought he was doing terrific," said his father, Bill. "Now he has two new brain tumors growing pretty fast."

Despite being hooked up to chemotherapy in his hospital room, Ben is a happy, smiling little boy.

"He's a good little boy, an incredible little boy," his dad said.

But it's about more than just Ben.

The need for help is great. Little is known about histiocytosis, McCollow said, making it more difficult to raise funds because fewer people know someone who is directly impacted by the disease.

At least 30 families in the Valley are facing the blood disease, which is caused by an excess of certain white blood cells called histiocytes. The cell clusters can be fatal and generally strike children younger than 10. Both the cause and the best form of treatment remain unknown.

About a dozen Valley families are helping to organize the event.

The goal is to raise $100,000 this year with the event at Arizona Horse Lovers Park, near Loop 101 and Tatum Boulevard. The proceeds will be given to the Histiocytosis Association of America to help with research.

"It may not help Ben, but that's what we need in the end, to find out what causes and drives this disease," Stokman said.

Increased awareness also is key. Since last year's event, people are talking about histiocytosis, Stokman noted, "and actually knowing how to say it."

This year's event will include a 5K run and walk; a team event where a five-person squad runs the 5K; a 1-mile run, walk or stroll; a "kiddie K" dash for children; and a competitive, timed mile run for kids.

There also will be a silent auction, firetrucks, animals, clowns and the Arizona Diamondbacks mascot.

While looking forward to November's event, the Stokmans are still touched at last year's outpouring.

"It was incredibly rewarding," Bill Stokman said. "I couldn't figure out how so many people would give so much of their life to help. They're giving so much and not expecting anything in return."

....................


FYI

A young boy's journey
The illness: Ben Stokman's journey began in April 2002, when his left eye swelled shut. Tests found lesions on his brain. Also, what seemed to be cradle cap were skin lesions. Ben started having episodes where he would go limp and stare off into space.

About six weeks after first going to the doctor because of the eye swelling, he was diagnosed with JXG, or Juvenile Xanthogranuloma. Ben now has a dozen brain lesions and one lung lesion.

Race information: Kickoff party is Oct. 24. Race day is Nov. 22 Information: www.bensrun.com
............

My plea:

For everyone in a position to participate or donate or even only take some time to find out more about LCH, please do.

Some of you migh know that my son suffers from the same disease. Although my son did not have to go through the hell that chemotherapy is, and the disease seems to be withrawing, there is no prognosis what might happen in the future. LCH (or hystiocytosis) is so freakin rare that it's called "orphan's disease" - ie there are so few cases in the world that no pharmacutical company or a research lab will bother investing into finding a cure. PPL that have this disease and their families are left on their own.

Hopefully, sometime in the future we'll see Ben participating in the race that has his name.

Thanks all.
 
OP
OP
*aca*

*aca*

Senior Member
Jul 15, 2002
869
#3
One of two things:

Either so many PPL get sick, that they start seeing possible profits from having found the cure and selling the medicaments or so many PPL become aware that this disease exist so that goverments start subsidising or financing the research.

Until then, donations are the only thing that remains. Doctors are advised to treat it as Leukemia, because it is similar in nature, but thats like curing the symptoms, rather than couses of the disease....

Only one in 2 million gets this disease......
 

SilvLightning

Senior Member
Sep 1, 2002
1,217
#4
Thanks for putting that article for us and making us aware of this rare disease. I live in Arizona so I'll surely be able to attend the events and donate money. Many students in my school, including me, like to do things like this to help out, so I'll be telling them about this. Last year we helped out with something called "March of Dimes" which helps premature babies. Hopefully this year in this new event we will be able to raise the $100,000.
 

Layce Erayce

Senior Member
Aug 11, 2002
9,116
#5
++ [ originally posted by *aca* ] ++
Either so many PPL get sick, that they start seeing possible profits from having found the cure and selling the medicaments or so many PPL become aware that this disease exist so that goverments start subsidising or financing the research.
does it have to be proven to a national government or is there an international organisation or a united nations branch that it can be taken to?
 

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