Help Us Help Mark Fight ALS

You may know a little bit about ALS from the ubiquitous “Ice Bucket Challenge” back in 2014. What was once a fun awareness campaign on Facebook has now become a very real and chilling part of our everyday lives.

As the whole world adjusted to one year of COVID, March 2021 ushered in a new reality for our family: Our dad, Mark Lusby, had been diagnosed with Amyotrophic Lateral Sclerosis (ALS). When we finally saw him for the first time since lockdown, he was 30 pounds lighter and hunched over, barely able to hold himself up.

Confronting it up close, you learn just how much this disease challenges human dignity at its core. Each new day brings with it new losses—strength, speech, joy, and time.

We don’t know how much he has left of any of these things, but we intend to make every single day count.

We Need the Support of Our Community

We can’t cure ALS, but we can do our best to ensure his quality of life, safety, and comfort.

Our dad has lost his ability to walk, lift, carry, grab, eat, and most significantly, hug. Fortunately, he still has the best smile in the neighborhood and he intends to wear it each and every day.

He has reached a stage of ALS that necessitates around-the-clock professional caretakers to assist him in everyday activities, using medical equipment that requires a special license to operate. He also needs a handicap accessible vehicle to get to and from his doctors.

The funds we raise here will go towards this in-home care and transportation, which we cannot do without your support. We thank you endlessly for helping us now, when we feel at our most vulnerable.

About ALS

ALS is an incurable, degenerative, and debilitating disease. What started out as reduced shoulder mobility has now become a living nightmare that has taken over his whole body.

When doctors give a formal ALS diagnosis, they tell you it’s an always fatal, motor neuron disease with no cure. What they don’t tell you is that it’s a family disease that will require every person in your life to provide support.

Like most families suffering from ALS, this disease has robbed our dad and mom of the ability to work, travel, dine out, see friends, and enjoy the new life in Florida they’ve worked so hard to cultivate. Some of us kids have uprooted our entire lives to move around the corner and others have been visiting to help every 4-6 weeks. Keeping our dad alive and happy is our number one priority and we hope to not have to do it alone.

About Mark

It’s so hard to ever imagine my life without my dad in it. He has made me so much of who I am today. He has showed me and my brothers how to care deeply about the people around us, to show how much we care by helping each other out as much as we can (especially with the little things), to work really hard for the things we want and need, and to be strong, independent, loving adults making our own ways in the world. But most of all, he’s taught us all of these things through his own example, through the way he’s lived his own life. And now he is teaching us once again: how not to give up when it all feels impossible, when the health you thought you could always count on is pulled out from under you, when you have no choice but to let others help you for a change. We’re so lucky to have you in our lives, Dad, and we want to keep you around as long as we can.

—Lindsay

My father has always been the embodiment of the classic TV Dad. He has always been there to tell me how proud he is and to offer advice, support, and love. I hope one day to be as great a father and role model as he is.

—Brett

Mark is the kindest man with the gentlest demeanor. I've known him to be soft-spoken against the louder voices in the family, but he loves harder than anyone else in the room. I miss his hugs most of all. Whenever it was time to say goodbye, I was instantly enveloped in a Mark Lusby bear hug that made me want to linger just a few moments longer.

—Stephanie, Brett's partner

I think of Mark as my own dad. His positive advice always lingers in my mind whenever I need it most! He says things like, “you’ll reach your goal one day, you’ll see, it’ll happen”. He encourages me and always says that the good will come, no matter the circumstance. The day I understood what a fatherly hug was was the day Mark accidentally stepped on the back of my flipflop, he said he was so sorry and gave me a hug and I remember thinking to myself, “Ohhh this is what a hug from my dad feels like”, and I will never forget it. After we moved to FL, I told Mark that he’s the dad I never had. My love for him and his kindness will always be cherished.

—Stav, Mark’s daughter-in-law

I knew life would change for my mom and me when Mark entered our lives. We had already experienced a significant life change, and as a 12-year-old, another life change was scary. Knowing that or not, Mark was compassionate and steadfast in doing anything and everything he could to convey his love for me and commitment to making life safe again. Since the first moment we met, Mark has been a defining person in my life in so many ways. He has shown me how to love and be loved unconditionally. Mark is my example of the phrase, "actions speak louder than words." Now, as a parent myself, I'm in awe of his ability as a father to guide my siblings and me by holding the space and giving us the room we need to make things our own. Now, with his diagnosis, he's teaching me that bravery isn't the absence of fear but the ability to continue on despite it.

—Lyle