Raising ataxia awareness to new heights!

On July 14th, a long time family friend and business assoiciate, Ben Stanson, will be embarking on a once in a lifetime journey.

He and about a dozen others will be making a trip to Africa. What makes it more special is that they are going to climb to the top of Mt. Kilimanjaro. The whole climb will be video documented.

When they reach the top, Ben will plant a flag provided by The National Ataxia Foundation with their logo on it. We are also going to have a banner with our own "Fight Ataxia" logo on it.

This will symbolize the need to "raise awareness" and hopefully bring some much needed publicity to our cause.

Recently in The Daily Herald

Lisle resident Joe Golminas is coordinating a supersize sale that could be called a charity fundraiser considering all proceeds will go to the National Ataxia Foundation for medical research.

The sale will have the usual assortment of knickknacks, toys, clothing, furniture, baby and household items to overflow the garage and out into the yard, but Golminas also will have some nifty donated items.

The biggest item is an 8-foot wood conference table donated by a law office. Other items include a large office desk, two kitchen tables with chairs, bookshelves, dressers and a love seat. Unusual items include a ceramic Wild Turkey liquor bottle, a pink feather duster and a karaoke machine. A pair of practically new portable air ventilation systems, an arcade-style dart board and a bread machine will go to discerning buyers.

Pricing is not set in stone. Customers can offer a fair price, keeping in mind the charity. The sale is from 9 a.m. to 3 p.m. Friday and Saturday at 4705 Schwartz Ave. in Lisle. To donate items for the garage sale, call (630) 512-0170.

The extended Golminas family planned a year of fundraising efforts to raise awareness and research dollars for Ataxia. Their goal is to bring in $10,000 with hopes it will go higher. A successful letter writing campaign to friends and relatives brought in almost half of the money.

Siblings Tammy Lewis raised another $1,000 in March based on the basketball championship, Terry Golminas is arranging a dress-down day at work, and Donald Golminas is working on a possible golf outing.

Mike Golminas along with Jonas Cepkauskas will have a Family Fun Day from noon to 4 p.m. Aug. 24 at The Barn of the Arabian Knights Farm in Willowbrook. For the kids, there will be a moon bounce, petting zoo and hayrides. Adults can enjoy a beanbag toss tournament, silent auction and door prizes. Everyone will have pizza, drinks and baked goods. Details are at fightataxia.org. Tickets are $25 for adults and $15 for children with a family package available. This event's proceeds will benefit the new Ataxia Clinic at the University of Chicago.

When a person is diagnosed with a serious illness, their whole family is affected. The Golminas family is rallying to help bring in research dollars and public awareness to a little known disease that their mother, Lisle resident Penny Golminas, lives with.

Ataxia means poor coordination of movement. The illness affects the cerebellum, which is the part of the brain that coordinates movement, said University of Chicago Ataxia Center director Christopher Gomez.

"Ataxia is an enormous family of diseases striking any age from infancy to old age," the doctor said. "Some forms are fatal and some are not. Many forms are genetic and half are hereditary. Some are recessive as (in they show) when you have two carriers."

Gomez said more people are suffering from ataxia than from Lou Gehrig's disease, amyotrophic lateral sclerosis, but it is hard to know numbers because sometimes people are misdiagnosed. Across the country, different labs are focusing on different research, he said. The need for research is great.

Ataxia may affect the fingers, hands, arms, legs, body, speech and movements. It leads to degenerative changes in the central nervous system. Friedreich's ataxia is the childhood-onset spinal ataxia.

The doctor said two good Web sites are www.ataxia.uchicago.edu and ataxia.org. His Ataxia Center is interested in enrolling all ataxia patients in its registry. Call (773) 702-5545 for the University of Chicago Neurology Department.

Penny Golminas was diagnosed with Sporadic Ataxia in 1999. Her type is not hereditary. Her husband, Don, is her principle caregiver. Both find an Ataxia support group helpful. There are two groups in the Chicago area and talk of a third.

Local support groups are raising money to make the public aware of the disease and its need for research dollars. In the year 2010, the National Ataxia Association, based in Minnesota, will have its annual meeting in Chicago that will draw national attention to help further define the illness, find ways to slow its progression and search for a cure.

Penny Golminas has been always a carrying person. When her family was younger, she helped organize garage sales to help a family going through financial difficulties in her neighborhood.

Her love of quilting and fabric art led her and her husband to create a successful prayer blanket ministry at St. Joan of Arc Catholic Church in Lisle. Hundreds of blankets have been given to people in the grips of serious illness thanks to the efforts of dozens of volunteers.

"When illness strikes a family, at first you are adjusting to the illness," Joe Golminas said. "Then you realize you want to raise money for research and awareness so other families do not have to go through this."

Inspired by his parent's determination and strength, Joe Golminas ran the Chicago Marathon twice with Teams in Training to raise money for the Leukemia and Lymphoma Society.

In January, he will run a marathon and a half in Disneyworld raising funds for Ataxia. Participants run 13.1 miles the first day and 26.2 miles the next day. It is a formidable challenge for a person who began a serious running program in 2006 - the kind of challenge his mother faces daily.

NOTE; The climb was a success. A short highlight was shown on August 24th!