Asher Lennon Lion's SMA Journey

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.

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.

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.

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.

12/01/2025

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

Thankful 🍂 Merry 🎄Happy 🥳

11/26/2025

This is amazing news for our community.

As a family who dedicated over 10 years to participate in a clinical trial, one of the most heart wrenching experiences has been to watch drugs that have promising results be available to only some people affected by SMA, not all.

Available treatments are still not accessible in parts of the world.

Let’s keep fighting for !

Incredible news for the SMA community! Novartis has received FDA approval for Itvisma® (onasemnogene abeparvovec-brve)—a new SMA treatment option bringing greater independence and new possibilities for individuals living with SMA.

This is a meaningful step forward in our collective mission to address the critical unmet needs of older individuals living with SMA while empowering families with more options for care.

Learn more about this exciting development and what it means for individuals and families impacted by SMA: https://www.curesma.org/novartis-receives-fda-approval-of-itvisma-for-the-treatment-of-sma/

10/31/2025

If your doorway has steps leading to it, consider bringing festivities beyond the steps so wheelchair users can participate.

Creating family themed costumes centered around Asher’s wheelchair use was just the beginning of creating a world of inclusion and accessibility for him.

10/23/2025

12 years ago today, Asher was the 11th infant in the world to be treated intrathecally with , an experimental drug by Ionis Pharmaceuticals, Inc. to treat Spinal Muscular Atrophy ( ).

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.

At the time there was limited information about the prognosis of SMA after treatment. We didn’t know what to expect but we had hope the treatment would improve Asher’s chance to fight the disease, live longer and possibly improve his quality of life.

Three years after Asher started in the clinical trial the drug was finally FDA approved (called by Biogen). It became the first approved treatment for SMA.

Since his first treatment, Asher continues to fight the disease progression and live abundantly.

Happy Spinraza Treatment Day!