The ALS Therapy Development Institute (ALS TDI) relies entirely on donations to fund its mission to find treatments for ALS, commonly known as Lou Gehrig’s disease. Our dedicated supporters and fundraisers are what keeps our research going. Alina Russell has worked tirelessly for over a decade to help raise money for our research in memory of her father, Richard, who passed away from ALS in 2011. We spoke to Alina about her story and why she has chosen to work so hard for so long to support ALS TDI’s mission.
ALS TDI: Can you briefly share your story and your connection to ALS?
Alina Russell: My connection to ALS is a very personal one. In January of 2010, after months of misdiagnoses, my dad, Richard Legeckis, was diagnosed with ALS at the age of 69. His diagnosis was the bulbar onset of ALS. He had experienced a variety of symptoms including a hoarseness in his throat, increased difficulty speaking and swallowing, and eventually slurred speech. Because he had been relatively healthy and active his entire life we were all shocked by the diagnosis and could not believe that this could be happening to us.
My father lived with the disease for less than 2 years before finally passing away on October 21, 2011, which also happened to be my husband's 40th birthday. We watched him go from a vibrant, healthy man full of energy and life to being unable to eat, swallow, speak, and eventually walk and breathe. It was truly devastating for all of us including myself, my sister, our husbands, and children and especially my mother Marta, his beloved wife of 44 years.
Is there a particular anecdote about your dad that you would like to share?
My dad was a Lithuanian immigrant whose parents arrived in the US after World War II; his family had to start from scratch in a new country. My father had to assimilate to life in America and learned to speak English at the age of 9. As a result, he became very self-sufficient and was well known in our family for doing everything himself. He wouldn't think of calling someone to come fix something in the house or yard if he could figure out a way to do it himself.
One time I mentioned to him that I couldn't figure out how to install a child-proof gate at the top of the steps in our new house. The next thing I knew he showed up at my house with his arms full of random pieces of wood, plexiglass, and various tools and bolts. I left him in charge of the kids as I went to work and when I returned he had fashioned a solid contraption to hold the gate in place from what looked like random junk and even cut a small hole in the plexiglass to allow the cats to pass through. He could always figure out a fix for anything, which made the diagnosis of ALS so tough for him, since it was unfixable.
Can you explain how you became connected to ALS TDI?
I first became connected to ALS TDI when my dad was still alive. He scoured the internet for answers when he was diagnosed and he held ALS TDI in high regard for their commitment to raising 100% of their funds for research to find a cure. Being a scientist himself (he was an oceanographer for the National Oceanic and Atmospheric Adminstration) he appreciated the organization for their tireless efforts in finding a cause, treatment, and cure for ALS.
Can you talk about how you and your family have supported ALS TDI over the years?
Our first efforts as a family to raise money for ALS TDI occurred during the year and a half that my dad lived with the disease. I set up a fundraising page on their website called "The Legeckis Wave" named after a wave formation my dad had discovered in the Pacific Ocean during his years as an oceanographer studying satellite images of ocean currents. We raised several thousand dollars at the time and my dad was overwhelmed by the wonderful comments that friends and family left on the site when donating.
In 2019 I was chosen as one of 15 charity runners for ALS TDI as a participant in the New York City Marathon and raised almost $8,000 by asking for donations and holding several raffle drawings. Most recently, I have connected ALS TDI with a few local breweries in my area for the Ales for ALS fundraiser. Our favorite local brewery called Fair Winds brewed a beer called Luckiest Man IPA and donated a portion of their proceeds back to ALS TDI. I remain committed to helping ALS TDI continue to receive funding because no other family should have to go through what we experienced.
What motivates you to continue to fundraise for ALS research?
ALS has no treatment and no cure. When they receive a diagnosis, it's a death sentence. ALS also does not discriminate and as time goes on I meet more and more people who have some type of connection to ALS. People with ALS do not have time on their side, which is why finding a treatment and a cure must remain a top priority.
What would you say to people who may not be personally connected to ALS about why research funding is needed?
I would tell people to try to imagine if they or someone they loved were told they have ALS; that they have 2-5 years to live if they are lucky, that they will slowly lose the ability to speak, eat, walk, hug their families, breathe on their own, and that eventually they will be left inside the shell of their bodies with their minds completely intact and aware of what was happening. I would ask them to imagine the emotional and financial toll that this illness takes on the families of people who have ALS. I would tell them that every little bit counts toward the goal of eradicating this disease once and for all.
To join Alina in supporting ALS TDI’s mission to find effective treatments for ALS, click here.