A Family’s Fight: Jenny Galle Runs for a Future Without ALS

Jenny Galle, Bank of America Chicago Marathon TeamALS Athlete

“My story starts back in 1990 when I was eight, and the first known diagnosis for my family was given to my Grandmother Olympia Olson. And sadly by the time I was twelve, she had passed. At the time not much was known to us about this disease, what it was, or how you even get it. We had no organizations or doctors that knew enough to give us a warning as to what the next few years would hold. No explanation of the progression of the disease, what it would take from her, and sadly who it would take from us.

My family began its research, and by 1998 my Uncle John had been diagnosed with the same disease, and the sadness again overwhelmed us all to hear that it was ALS. This drove my family into overdrive. We created a foundation to raise money through golf outings and auctions, and John was signed up for a research program being run out of NYC and later funded by ALS TDI which began in 1999.

After a few years of trial studies, it was found to have no effect on John and the disease progressed, and by 2005, he too had passed.

After his death, this drove our family again into overdrive. We became close with the ALS TDI (Therapy Development Institute) out of Boston, and regularly held meetings with them over research, therapy, and ways to create and raise funds. Our own family members learned more about this and that there is now a known genetic and familiar SOD1 marker that we carry.

Within the testing period, a sad realization was made that there were more members of our family carrying a 50% chance of being diagnosed through the triggering of this gene, and that is when in 2007 my Uncle Rick Olson was diagnosed. With this being the 3rd time around we knew what to expect. We did everything we could to make him comfortable and make his last years, however long they would be, the most memorable years of his life. Then in 2013, he passed peacefully as well, as the others had before him.

His son took into researching our family history, seeing if there was anything that we missed, signing up for a Research Study out of Florida and himself getting tested. Through this process another and 4th member of our family, my Aunt Patti Olson was diagnosed in 2016. She knew what was coming, she knew she had it for a number of years, and that fear drove her to avoid getting tested at all. Within another two years of her diagnosis, she too had passed away in July 2018.

Through my cousin’s research we have found family back in Romania through death records dating back through the early 1920’s to 1940’s that there is a high likelihood that another distant Great Uncle too passed of this disease.

This has been a dark cloud that has hung over my family, and the fear is not only real but expected that at some point someone else in the family is going to be diagnosed. We are hoping that when that time comes, the research will be further funded and a diagnosis will have been found to either slow or stop the progression of this disease altogether.

Thank you for your organization and this fundraising event to further help funding and research.”