Asher Lennon Lion's SMA Journey

Asher Lennon Lion's SMA Journey Asher Lennon Lion's ("our lion") journey with Spinal Muscular Atrophy (SMA). Our beautiful boy. He was born perfect. He is perfect. Guess how old Asher is now??

But within him, he is one gene from perfect. Because of this imperfection we were told he wasn't going to live beyond two years. He is alive because of a medical miracle. A miracle that takes long years, lots of funding and so many hearts who are invested in research and hope. Hope is in Asher's genes thanks to countless people who made this journey possible. Asher was diagnosed with Type 1 SMA (Spinal Muscular Atrophy) at six months old. SMA is a debilitating, genetic neuromuscular disease, affecting babies and children much like Lou Gehrig’s Disease or ALS. This devastating disease destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, swallowing, and even breathing. Asher is treated with , an experimental drug by Ionis Pharmaceuticals, Inc. (now FDA approved called by Biogen). The drug is administered intrathecally. Asher has been receiving the drug since seven months old. Learn more about SMA and funding for research at curesma.org.







Today is National Caregivers Day - a day to recognize and honor professional caregivers and family members, friends, or ...
02/21/2026

Today is National Caregivers Day - a day to recognize and honor professional caregivers and family members, friends, or neighbors who provide care.

THANK YOU CAREGIVERS!!!

Hoping this is the beginning of a beautiful thing 🙏🏼
02/17/2026

Hoping this is the beginning of a beautiful thing 🙏🏼

We love someone rare today and everyday 🫶🏼Much love to all 💕
02/15/2026

We love someone rare today and everyday 🫶🏼

Much love to all 💕

is officially registered with as a non-conference team. The first two games of the season they were defeated by Burba...
02/05/2026

is officially registered with as a non-conference team.

The first two games of the season they were defeated by Burbank. Asher scored the only goal in the games making him the first player with a score for the newly registered San Diego county team. Way to go, Asher!!

Come check out the team’s first home game this weekend. The game is hosted in beautiful Oceanside right off the beach. Event details are on the team page.

In 2013, Asher was enrolled in a clinical trial at seven months old. Three years later, on December 23, 2016, the FDA a...
02/02/2026

In 2013, Asher was enrolled in a clinical trial at seven months old. Three years later, on December 23, 2016, the FDA announced that it approved SpinrazaTM (nusinersen), making it the first-ever FDA-approved therapy for SMA.

The FDA went on to approve Novartis AveXis’ onasemnogene abeparvovec-xioi (Zolgensma) in May 2019 — a gene-replacement therapy for SMA; and Risdiplam (Evrysdi™) in August 2020 — the third disease-modifying therapy to treat SMA.

Thirteen years later Asher continues to be treated with SpinrazaTM (nusinersen) and has lived longer than expected with better quality of life. His diagnosis with SMA was rare and his journey with SMA has been rare.

Not every rare disease has a treatment or cure. We are so thankful to the teams of clinical research professionals, doctors, scientists and participants living with conditions who stay committed to advancing medicine.

Alone we are rare. Together we are strong.







*****

RARE Diseases: Facts and Statistics

• More than 30 million Americans live with a rare disease. That’s 1 in 10 of us.

• There are 10,000+ different types of rare diseases and disorders identified, with more being discovered each day.

• Rare diseases affect an estimated 350 million individuals worldwide.

• More than 95% of rare diseases are still without an FDA-approved treatment.

• Many rare diseases may result in the premature death of infants or can be fatal in early childhood.

Did you know that February is Rare Disease Month and February 28th is World Rare Disease Day?More than 350 million indiv...
02/02/2026

Did you know that February is Rare Disease Month and February 28th is World Rare Disease Day?

More than 350 million individuals are affected by rare disease globally.

Although patients may be similar in many ways, symptoms and severity vary from patient to patient with rare disease. Much like the stripes vary from zebra to zebra. If you look at one hundred zebras none of their stripes will match exactly.

Wearing stripes can start a conversation that helps others learn about the prevalence and challenges of rare diseases. Take a picture of your striped look and share it on social media with the hashtags and to join this celebration of the many faces of rare disease.

On Rare Disease Day, let’s embrace our stripes and unite by saying we are “Zebra Strong.”





*****

RARE Diseases: Facts and Statistics

• More than 30 million Americans live with a rare disease. That’s 1 in 10 of us.

• There are 10,000+ different types of rare diseases and disorders identified, with more being discovered each day.

• Rare diseases affect an estimated 350 million individuals worldwide.

• More than 95% of rare diseases are still without an FDA-approved treatment.

• Many rare diseases may result in the premature death of infants or can be fatal in early childhood.

Asher made history last Wednesday. Being the first disabled wheelchair user to perform in our local performing arts cen...
12/18/2025

Asher made history last Wednesday. Being the first disabled wheelchair user to perform in our local performing arts center .pac

He performed in the “Broadway Holiday” Winter Recital opening act Christmas in New York and the opening Improv for Act 2, Talk or Die (a Jolly Death).

In September Asher fell in love with Improv thanks to a workshop hosted at Surf Away+ event. He immediately joined a local improv class and has loved his experience at And All That Jazz!!! Performing Arts Center. He is excited for more theater in 2026.

Thanks to big dad muscles and big hearts that support inclusion, we were able to maneuver Asher on and off a stage without a ramp. We may need more than heart and muscles next year. Reach out to us or the center if you can help us redefine accessibility on stage.


12/02/2025

We stopped fundraising a long time ago because we just weren’t good at it. We never raised a lot of money or even reached our goals. Maybe we didn’t try hard enough. Maybe we didn’t know the right people. Maybe we didn’t have a big network. Whatever the reason it doesn’t mean we stopped seeing needs everywhere.

We see the need for medical expenses. We see the need for research and development. We see the need for adaptive equipment. We see all the needs.

For some reason, the need that goes unmet and bothers us the most is when there is a need for an accessible van. Families can’t seem to ever fundraise enough money independently and there aren’t enough programs and foundations that help fill the need.

So, as you consider giving on this , if you know someone in need of an accessible van, help the family. We realize there are tax benefits to non-profits, but still consider meeting a personal need of your neighbor.

Love,
Us-another family still lifting their child into their van.

We hope everyone is as excited for Christmas as Asher!!!Thankful 🍂 Merry 🎄Happy 🥳
12/01/2025

We hope everyone is as excited for Christmas as Asher!!!

Thankful 🍂 Merry 🎄Happy 🥳

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