Al Croft’s Day of Hope
Al Croft raises awareness for Late Onset Tay-Sachs disease and funds for research and family services.
Meet Al
My name is Al Croft, and for more than 15 years, I searched for an answer to a question that shaped my life: Why was my body slowly changing? My balance worsened, my legs became stiff, my muscles grew weaker, and each year seemed to bring new challenges. Alongside my parents, I visited countless doctors, hoping someone could explain what was happening.
In December 2015, I finally received my diagnosis: Late-Onset Tay-Sachs disease (LOTS). The moment was overwhelming. On one hand, I was terrified. I knew very little about the disease and feared it meant my life would soon come to an end. On the other hand, after years of uncertainty, we finally had an answer. The mystery was over, and we could begin learning how to face it.
A Long Search for Answers
My neurologist and the outstanding team at UCLA Health helped me understand LOTS, but emotionally, I was still struggling. A diagnosis can explain your symptoms, but it doesn’t erase your fears. Looking for people who truly understood what I was experiencing, I discovered NTSAD in early 2016 and attended my first Annual Family Conference.
Finding My NSTAD Family
Walking into that conference changed my life. For the first time, I met people who didn’t need an explanation. They simply understood. What I found wasn’t just an organization—it was a family. I never imagined I would become part of this community, but today I cannot imagine my life without it. Thank G-d for leading me towards NTSAD.
The Foundation That Shaped Me
Before LOTS entered my vocabulary, I was fortunate to have a childhood filled with love, laughter, and opportunity. I excelled academically, though sports never came easily to me; I was (and still am) a klutz. I was deeply involved in my Jewish synagogue, youth groups, and cherished my summers at sleepaway camp. My family and friends surrounded me with unconditional love, giving me a foundation of strength that continues to carry me today.
I earned my bachelor’s degree in English from UC Santa Barbara and later completed a master’s degree in Psychology with an emphasis in Marriage and Family Therapy. Along the way, I worked as a teacher, camp counselor, customer service specialist, and credit analyst for a national bank. Those experiences taught me that every person has a story, and every struggle deserves compassion—a lesson that has become even more meaningful through my own journey.
The Soundtrack of My Life
If there has been one constant throughout my life, it has been music.
My love of music began before I was even born. My mom introduced me to Aretha Franklin, Elvis Presley, and The Beatles while she was pregnant with me, and I have been building the soundtrack of my life ever since. Billy Joel, Prince, the Grateful Dead, Phish, Bob Marley, and countless other artists have provided joy, comfort, and inspiration through every stage of my life.
My first concert was The Jacksons’ Victory Tour at Dodger Stadium in 1984. Since then, I’ve attended hundreds of concerts across several states and even a few countries. Live music isn’t simply entertainment for me—it’s where I feel most alive.
Adapting Without Giving Up
As LOTS has progressed, I’ve had to adapt. My walker and mobility scooter have become my companions at concerts, allowing me to continue doing something I love. Although injuries and surgeries have forced me to attend fewer shows each year, they have never diminished my passion. Music continues to remind me that even when life changes its rhythm, the song doesn’t have to end.
A Life-Changing Fall
On July 3, 2026, life tested me once again.
My mom and I were watching television when I took my empty dessert plate back to the kitchen using my rollator. Without warning, my legs buckled. Instinctively, I reached for my rollator to steady myself, but it shot out from beneath me, rolling back into the family room while I crashed to the floor.
In an instant, I had fractured my tibia and fibula and severely damaged the connection between my lower leg and my knee.
Emergency responders transported me to the hospital, where I underwent ORIF surgery followed by nearly a month of intensive physical, occupational, and speech therapy.
Recovery has been difficult, painful, and at times frustrating. Yet it has also reminded me how incredibly fortunate I am. I received exceptional medical care. My parents have been by my side every step of the way, offering endless love, encouragement, and support. I truly could not have faced this journey without them.
The hardest part wasn’t only the broken bones—it was having to cancel the concerts I had been looking forward to all summer and fall. I was grateful to recover the cost of my tickets by selling them, but emotionally, I was devastated. Those concerts represented experiences, memories, and moments of joy that I had anticipated for months.
Choosing Resilience Every Day
This fall came only about 18 months after my previous serious fall that also required surgery. Some people might see those setbacks as reasons to give up. I choose to see them as reminders of how many times I have gotten back up.
Living with LOTS has taught me that resilience isn’t measured by how often we fall. It’s measured by our willingness to rise again, no matter how long recovery takes.
Every day presents new challenges. Some days are harder than others. But every morning I wake up with another opportunity to fight the progression of this disease through physical therapy, exercise, determination, and hope.
LOTS has changed many parts of my life, but it has never taken away the things that matter most: my faith, my family, my friends, my love of music, and my belief that life is still filled with purpose and joy.
One Step, One Song, One Day at a Time
I don’t know what tomorrow will bring, but I do know this: I will continue moving forward, one step, one song, and one day at a time.
And for that, I remain profoundly grateful.
Ways to Give
Mail or Phone
(617) 277-4463
Checks payable to NTSAD.
Mailing Address:
2001 Beacon Street
Suite 204
Boston, MA 02135.
