Raising funds to “Defeat ALS” in memory of Helen Grimm Leger

Above: Southborough native Linnea Leger is working for a cause that was important to her late mother Helen. (images here and below edited from contributed photos)

On November 4th, Linnea Leger will Walk to Defeat ALS.

The fundraiser to find a cure for the disease is all the way on the other coast. But her personal cause has deep Southborough roots.

In hopes of finding support from her hometown, Leanna reached out to share her story.

Below, she writes about her memories of her hometown and, most importantly, her mother Helen Grimm Leger:

Helen Grimm Leger grew up on 10 Latisquama Road in Southborough with her 4 brothers, all of whom attended Algonquin Regional High School. She married my dad at Pilgrim Church in 1990 and when I was born 3 years later, 10 Latisquama was my first home. After purchasing a house on Parkerville Road and quickly outgrowing it after my two younger brothers were born, my parents decided in 2001 to move our family back into the home my mother and uncles had been raised in.

Growing up in the heart of Southborough was perhaps not the most exciting childhood, but it was definitely a good one. After school, my brothers and I would walk down to Mauro’s Market to buy slushies, check out more books than we could carry from the library, or ride our bikes to Woodward. Growing up in a house that had been in my family for decades offered me the opportunity to hear those childhood stories that only come back in the place where they happened. It gave me a stronger sense of identity and a closer relationship to my mom and grandmother, who to this day remain the strongest women I have ever met and my biggest role models. I heard stories about how my grandmother took in neighborhood kids who had nowhere else to go even while my she herself was living off of yogurt in order to afford feeding her family.

These stories were made all the more real by the house and town around me. Seeing the words “Coop was here” inked into my bedroom windowsill introduced me to stories about one of a dozen “brothers” whom my mother had grown up with. My parents often took in boarders themselves as a way to give back to relatives and friends who had nowhere else to stay. My mother and grandmother taught me the importance of giving back regardless of how little money we ever had. “No matter how bad your situation may seem, there is always someone who is in more need” is the motto that I was raised by, and when I decided to study social work in college, it felt like I had been preparing for it my whole life.

On April 29, 2010 I was a sophomore at Algonquin. Mom had been experiencing strange symptoms for over a year after a family trip to Rhode Island, and was convinced that her weakened muscles and decreased mobility in her left foot were caused by Lyme Disease. After visiting countless doctors and specialists and receiving many negative test results, it was on this date that she finally received an answer: ALS.

ALS, or amyotrophic lateral sclerosis (also known as Lou Gehrig’s Disease) is a neurodegenerative disease that impacts nerve cells in the brain and spinal cord. People who have ALS lose the ability to control muscle movements, which my mom was now experiencing in her foot. After her diagnosis her mobility began to decline further, leading her to progress from walking with a cane, to a walker, to utilizing a motorized scooter, and eventually to using an electric wheelchair full-time. Always an incredibly independent person, she had to become more reliant on others as the muscles in her hands became weaker and she was unable to do simple tasks without assistance. Marge Coldwell, who had been my mom’s 4th grade teacher, became a close friend to her as she brought our family donations from the food pantry. My mom often asked if the donations were needed by anyone else before she accepted them, still governed by the desire to do without if it would help someone else more.

In early December 2013, my mom was hospitalized with a severe kidney infection. While there, her breathing capabilities, which had been declining as her ALS progressed, became bad enough to necessitate her doctors intubate her. Though efforts were made to get her off the machine, she was unable to breathe on her own again. In the early hours of December 12, just 5 days after my 20th birthday, she passed with me by her side. She was 55.

My mom’s experience with ALS is far from atypical. There is no known cause of ALS, and the diagnosis process can take months or even years as doctors rule out every other possibility. 90% of ALS cases are sporadic, meaning it can impact anyone at any time, though for unknown reasons military veterans are twice as likely to be diagnosed as the general population. The average life expectancy from time of diagnosis is 2-5 years.

In the summer of 2014, only six months after my mother passed away, ALS was catapulted to the top of everyone’s newsfeed with the viral Ice Bucket Challenge. The primary benefactor of this huge influx of funding was the ALS Association, the nation’s largest ALS charity that focusses on funding research, providing free services to patients and families, and advocacy. Thanks to this funding, the ALS Association has funded research that has found approximately 30 new genes associated with ALS. While there is still no cure, when my mom was diagnosed there were no treatment options either. In 2017, the FDA approved Radicava, the first new ALS treatment to be approved in 22 years, with many more drugs in the clinical trial phase showing progress.

In March of 2018 I accepted a full time position as the Community Outreach Assistant at the ALS Association Golden West Chapter in Los Angeles, where I now live. On November 4, 2018 I am joining the movement to cure ALS by participating in the LA County Walk to Defeat ALS in memory of my mother. I don’t want any other person to experience what my family went through. We are right on the cusp of a breakthrough in ALS research and I truly believe that the next few years will see even more progress toward a cure. 90% of the ALS Association’s revenue is donations from our Walks to Defeat ALS, so your dollars are exponentially important to our reaching that goal of a world without ALS. Whether it be in memory of my mother, in honor or memory of someone you love, or in support of the nearly 20,000 people in the United States who live with ALS at any given time, every dollar donated is one step closer to a cure.

To read more about my family’s story with ALS or to make a donation, please visit web.alsa.org/goto/linneaelise

Updated (10/21/18 9:00 am): My apologies to Linnea for misspelling her name.