ALSP is…LAUREN

When we talk about ALSP, we mention numbers & percentages, symptoms & scientific terms. But ALSP isn’t just facts and statistics on a page. ALSP is a life altering diagnosis.

ALSP is Lauren.

Lauren is a graduate of Arizona State University, a member of Sigma Kappa sorority, a Rallyback for the Arizona Diamondbacks, a daughter, a sister, an aunt, a world traveler, a music lover and a flight attendant for American Airlines.  In 2023, Lauren was diagnosed with ALSP at the age of 29.

Since then, ALSP has robbed Lauren of her ability to speak, her ability to walk and her ability to care for herself.

ALSP is Loss of Autonomy.

Early symptoms of ALSP typically present around age 40 and involve psychological and cognitive changes, but they can also appear as motor problems or seizures. Eventually, people with ALSP lose the ability to walk, lose control of most other bodily functions, and require daily 24/7 care, either by family members or in a care facility.

Lauren’s initial symptoms began much earlier, at the age 26, and have progressed rapidly. Her mother, Veronica, retired from her job to be Lauren’s full time caretaker.  Lauren’s sister, Brittany, also helps with her care while raising two daughters of her own. In the words of Brittany, Lauren’s sister:

“Lauren was the most fearless, independent, fiery Aries you would ever meet. She loved to travel, go to concerts, explore new cities, talk to strangers, go on roadtrips, and she would do it all accompanied, or alone it didn’t matter to her! She truly loved whatever life would bring her that day, or who she would happen to meet. Having her autonomy taken away by ALSP is one of the hardest things to witness. She can no longer do anything alone. Not one thing. She needs constant vigilance and care.  From being a true pioneer in so many fashions for our family. She told me when she first got diagnosed that not being able to drive was so hard. She really missed it. It truly is something so intense to witness the stark difference of who she was then and who she is now.”

ALSP is Loss of Speech.

Symptoms of ALSP and the rate of disease progression vary from person to person, even within a single family.  Eventually, most patients with ALSP will lose the ability to speak and even swallow. Lauren lost her speech early on in her disease progression. In the words of Brittany, Lauren’s sister:

“The second hardest thing that ALSP has taken away from Lauren is her voice. Not being able to hear Lauren’s voice has been very hard. She was always so joyful and happy, and made silly voices. She had a contagious laugh and would always make her presence known. I miss talking to her, and having sister conversations. I miss that my girls will never be able to hear how much their Tia loves them. There’s so much I miss about not being able to talk vocally but she still understands so much which I’m so thankful for. She understands everything you tell her and I can always make her laugh, which makes me happy. She’s able to join in on conversations and I know she’s there. I am thankful in that aspect, but I know it’s hard because I also know she understands what’s happening to her, but can’t vocalize it and that really is devastating.”

ALSP is a Thief of Time.

There are an estimated 10,000 people with ALSP living in the United States.  Over 75% of them are undiagnosed or misdiagnosed with another neurological condition such as early onset dementia, multiple sclerosis, Parkinson’s disease, autism or depression.  Lauren began exhibiting her first symptoms of behavioral and mood changes in 2020, but was not correctly diagnosed with ALSP until January 2023. In the words of Brittany, Lauren’s sister:

“The third thing that I didn’t realize ALSP took away from us was precious time. When Lauren was fully able bodied, vocal, independent, but also in the mist of early onset symptoms. That was our window. A window we could have spent who knows how. But it’s a moment that will be missed dearly.  While her doctors were trying to label her diagnosis, and while we were trying to reason with her through her generic, but unusual for her symptoms; we could’ve been doing so many other things. If we would’ve known what she had earlier, the precious time that we did have would’ve been spent a lot differently.”

ALSP is Lauren, but Lauren is not ALSP.

Lauren is a Contagious Smile, Constant Laughter & a Passion for Life.

“What I love most about Lauren is her smile and her passion for life. She has always loved a photo opportunity, and she is always laughing and smiling so big! Even now despite everything she’s been through she still laughs and smiles. She can understand us and I feel like that’s the biggest blessing we have. She knows us still and has her long term memory. Knowing she is in on the jokes, and the ways we can make her smile really brighten our day. “

Lauren is Giving, Empathetic, & a Best Friend. Lauren is Hope.

“I always love that Lauren is so giving. She always thinks of others and is so empathetic. Lauren is the type of person that will share her last bit of food with you, or text you to make sure you got home. She will go up to the person who isn’t mingling with everyone and get them to join the group. She notices the small details and the things most people look past. She hears unspoken words and can cheer anyone up with a story or a lending ear. Lauren makes sure everyone feels included, loved, and wanted. She is the best friend to have.”

An update from Lauren’s family:

“Our sweet Lauren passed away on Thursday February 6th, 2025.

She fought hard up until the very last day.

Lauren is the epitome of strength, love and beauty.

She is a warrior, pioneer, and a sweet compassionate human who loved everyone she met.

There isn’t anyone that knows her that doesn’t absolutely love her.

Lauren lost her battle with ALSP. However she gained what she always dreamed of, to be surrounded by so much love.

She got the love she deserved. Even though it didn’t come as she was.

You will forever be with us. You are our star telling us to not dim our light for anyone. To take up space, and to shine bright effortlessly."

✨♥️⚾️🕊🧠💜✈️🐶🐾👯♀️💃🏽

Our sincerest thank you to the Guzman Family: Lauren, her mother Veronica and her sister Brittany, for sharing Lauren’s story and their journey with ALSP.