Archive for Thursday, May 26, 2011

Family’s experience with ALS prompts June 18 fundraiser

May 26, 2011

Susan Baker, office manager for the Baldwin City Chamber of Commerce, knows the disease ALS well, and is trying to raise money to help doctors understand the disease better.

Baker is hosting a beanbag toss game, also know as cornhole, tournament to raise money for ALS research at the ALS Therapy Development Institute.

“The lab that I’m supporting has a molecule ready to go into clinical trial that has shown that it has shown some benefit in the mouth model, and so we’re really wanting to help them get that into clinical trial so we can get that out to patients,” Baker said.

The tournament will occur on the same day as the Planes, Trains and Automobiles event and will take place at 11 a.m. June 18 in the Baldwin State Bank parking lot. Baker is asking for a minimum donation of $60 per two-player team. The event will also include trophies for the winning team, door prizes and either a raffle or silent auction.

Baker is hoping at least 20 teams participate and is also looking for sponsors or people to donate items to be given away during the tournament. Baker has a goal of raising $3,000 to give for ALS research.

Baker would like to make the tournament an annual event, and also create another fundraiser to support the ALS Guardian Angels Foundation.

“I’ve gotten out and talked to some of the local civic groups and told them a little bit about my story and about the need and what I’m trying to do and they’ve been very supportive,” Baker said.

While most cases of ALS are sporadic, Baker’s family is a part of the five to 10 percent of cases inherited within a family. Baker’s mother was the fourth-known case of ALS in her family, and Baker and her siblings have a 50-percent chance of developing ALS.

Baker hopes the money she raises can help researchers discover ways to help treat the disease.

“Considering that there is still no viable treatment, you know, there’s nothing to offer patients to even relieve symptoms or maybe just prolong their life or give them a better quality of life,” Baker said. There’s just nothing.”

A memory tree will also be present at the event. People will be able to write the name of someone who has been affected by ALS on a ribbon, which will be tied to the tree. The tree will then be planted somewhere in the community.

With Baker taking on the creation of the project on her own, with just a couple of friends helping with the tournament, she was originally unsure if she would have time to devote to the event. While the thought of waiting a year to begin the responsibility crossed her mind, Baker knew money needed to be raised now.

“I didn’t think I had time to do it this year and considered waiting, and then I thought, you know, I can’t wait, you know, a whole year,” Baker said. “And delaying getting funds to this lab could delay a treatment, and I just can’t wait.”


alsfighter 6 years, 12 months ago

To learn more or to register for the tournament, please visit


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