Asher Lennon Lion's SMA Journey

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/

11/23/2025

Asher had an amazing opportunity to join the LAFC (“green team”) in a scrimmage against the Burbank Power Soccer team (“blue team”).

The scrimmage was professionally filmed and will be used in promotional materials leading up to World Cup 2026, shining a national spotlight on Burbank’s commitment to inclusive and equitable recreation.

Keep an eye out for “Ash” on the big screen.

11/21/2025

Asher’s Power Soccer coach is something special. He has invested years into the sport and coaches a few different teams in Cali. Asher is a part of his San Diego recreational team.

Exciting event coming up this Sunday. Read more info provided by the City of Burbank:

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Hello Burbank Parks & Recreation Community,

We are incredibly excited to invite you to a special milestone event as the City of Burbank proudly hosts our first-ever Power Soccer competitive scrimmage right here in town!

Thanks to the City’s selection as a 26 Champions Grant recipient, our Burbank Power Soccer team will take on LAFC in a thrilling adaptive sports showcase and we would love to have you there to cheer on our athletes.

Please note: All attendees will be required to complete a waiver upon entry.

Below are the event details:
📅 Event Date: Sunday, November 23, 2025
⏰ Time: 12:00 PM – 2:00 PM
📍 Location: McCambridge Recreation Center
1515 N. Glenoaks Blvd., Burbank, CA 91504
📞 Info: 818.238.5330

This free community event will feature fast-paced Power Soccer competition played by local athletes who use power wheelchairs, one of the most dynamic and strategic adaptive sports in the world.

As part of the 26 Champions Grant, the scrimmage will be professionally filmed and used in promotional materials leading up to World Cup 2026, shining a national spotlight on Burbank’s commitment to inclusive and equitable recreation.

We are proud to celebrate our athletes, our coaches, and our growing adaptive sports community. We hope you’ll join us for an afternoon of energy, competition, and community spirit!

We look forward to seeing you there!

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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!