This week’s Mom Who Gives Back is Alina Legeckis Russell, a mom of two living in Springfield, Va. After her father was diagnosed with Amyotrophic Lateral Sclerosis (ALS) or “Lou Gehrig’s” disease in 2010, she and her family formed a team for the Walk to Defeat ALS. She walks in memory of her Tato and to raise money for a disease that has no cure. Her heartwarming and funny blog Ukalithian Mama documents her family’s journey and her experience with her father’s disease.
Tell me a little about your family and what you do for a living. Also, tell me about your blog and why you started writing.
I’ve been married for almost 14 years to my husband John – my best friend and soulmate. We have two kids, Jack and Ella, ages eleven and (almost!) eight. I work part-time as a home health physical therapist. I’ve been a PT for 15 years and have been in the home health field for 10. In January of 2010 I decided to start a blog. To be quite honest, starting a blog was a bit of a whim. I’ve always enjoyed writing and really needed some type of outlet for it. I approached it as a fun thing to do and the first several entries are pretty light and silly, not too personal. However, as the year progressed, I began to use it as a way to express my feelings as my dad entered his final months in his battle with ALS, also known as Lou Gehrig’s Disease. My blog became a form of therapy and when my dad passed away in October of 2011, it provided me with a place where I could go and pour out all the hurt that was in my heart. In doing so I was able to connect with my family and friends who read my blog and provide them with a way to make sense of some of the emotions we were all feeling.
What is the cause closest to your heart?
I am currently raising money for the ALS Association by forming a team for the Walk to Defeat ALS on Oct. 21, 2012 in Washington DC.
Why is this cause so important to you and when did you become an advocate?
My father, Richard Legeckis, was diagnosed with ALS in January 2010 after several years of mysterious symptoms and frustrating mis-diagnoses. He was a highly intelligent man who worked as an oceanographer for NOAA for over 30 years. He also enjoyed playing piano and guitar, dancing, gardening and working on various projects around the house. He was a strong and vibrant person so his diagnosis hit the whole family very hard. After he was diagnosed I felt helpless, like there was nothing I could do that would fix our bleak situation. I decided to form a team to raise money for the ALS Association so that our family could walk together in support of my dad and others with the disease.
How are you involved with this organization? List the ways you support this cause?
This will be our third year participating in the Walk to Defeat ALS, which will take place in Washington DC on Oct. 21, 2012 – exactly one year to the day of my dad’s passing. Our team is called the Legeckis Wave, named after a wave formation in the South Pacific that my dad discovered early in his career as a NOAA oceanographer. We are currently recruiting walkers for our team as well as collecting donations to help support the ALS Association, an organization that was extremely supportive to our family during my dad’s illness – supplying him with equipment, much-needed information about a confusing disease, and emotional and physical support. Last year we raised a record high of over $10,000 – a reflection of the outpouring of support we received at the end of my father’s life.
How do you balance your time with your job, your family and your involvement in this organization? Is your family involved in this cause as well?
Fortunately I work part-time and fundraising is relatively easy when you can use the power of the internet. My whole family is involved in the walk – the colorful signs my kids made for the first Walk to Defeat ALS will be used for the third time this October when we walk again. We are all signed up as walkers and asking our family and friends to donate in support of us.
Please share your hopes and dreams for the future of ALS?
When my dad was first diagnosed he scoured the internet for hours on end, searching for some type of answer, a miracle cure, a wonder drug that would take all of this away. I hope and pray that some day ALS will be eradicated forever and that no one will have to suffer as my father and so many others have and still do. It’s a vicious disease which takes away the ability to walk, talk, swallow, breathe. It takes away everything except the ability to think and feel and pray for a miracle. It needs to be stopped.
How can others get involved?
Educate yourselves, learn about the disease because it can happen to anyone, regardless of age, gender, race – it does not discriminate. Donate to organizations like the ALS Association, ALS TDI, Project ALS and so many others that are helping those living with ALS and raising money to fund valuable research to find a treatment and hopefully a cure.
Why is giving back important to you and your family?
Giving back in general teaches us all what it means to be part of this great thing called the human race. Giving back can be empowering and humbling all at the same time.
What is your best advice for instilling these values in our children?
Just lead by example. Show them what it means to do for others by doing it yourself.
Connect with Alina/Information on ALS Team
Team page for the Walk to Defeat ALS – The Legeckis Wave
Link to ALS TDI page for Richard Legeckis
Please nominate the next Mom Who Gives Back by e-mailing NicoleDash@gmail.com.