Asher Lennon Lion's SMA Journey

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!

10/10/2025

Just another Muscle Juice morning, studying Latin and practicing piano before getting prepped for a life-altering spinal injection of .

An hour drive to the hospital.

Meanwhile, fasting until 1230PM, in preparation for anesthesia.

Will hopefully be able to eat by 2PM if all goes well.

Just a day-in-the life of 12 year-old Asher.



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Spinraza works by increasing the production of a protein called survival motor neuron ( ). SMN is essential for the survival and function of motor neurons. In people with SMA, there is a mutation in the SMN1 gene that reduces the production of SMN. Spinraza helps to correct this mutation, allowing the body to produce more SMN.

10/09/2025

On October 8, 2013 we received a few phone calls from an unfamiliar number. We never picked up the phone because we were in the middle of an emotional down spiral from Asher’s diagnosis. Thankfully Jeremy listened to the voicemail messages. It was a doctor by the name of Dr. Richard Finkel who introduced himself as a muscular neurologist doing a clinical trial for Spinal Muscular Atrophy in Orlando, FL. We immediately called him back. He spent hours on the phone explaining so much about the disease, the drug and testing, and the hope for our son and all SMA children. On that call we learned the urgency of our situation as Asher was 207 days old and to enter the trial a child had to be examined and admitted by 210 days. It was a miracle, but Asher entered the trial on day 210!

When we moved to California in 2020 we left behind a community of people who watched our family navigate a devastating diagnosis and journey into the unknown world of a clinical trial. For those of you who are not familiar with this story, here is a short recap thanks to the Muscular Dystrophy Association.

A family's inspiring story of Spinal Muscular Atrophy treatment and awareness, supported by the MDA (Muscular Dystrophy Association). www.mda.org

10/06/2025

***Asher is ok****

In true Asher form, he flipped in his wheelchair and busted his chin (again) this weekend. Wish we could say it will be the last time but you never know with his independent, adventurous and determined spirit. This time he only needed glue on the gash and no teeth were damaged 🙌🏼 The pain, however, was pretty bad initially. It took a minute to grab and place it on his chin. In seconds the pain was gone. Asher said, “mom, how did you do that?” Like mom said, the patches!

Too bad we can’t place a patch on the heart when these moments are hard as a parent. It’s still the best feeling in the world to feel like a magician when you can turn pain off in seconds. Now to share the magic…it’s real!

10/04/2025

In 2018, Asher took his first unassisted steps on October 4th. He took 12 steps, 3 times during home physical therapy. We affectionally celebrate this day as The Day of 36 Steps.

This year his steps look different but we celebrate the same - with unbelievable gratitude. It’s amazing to recall that Asher took his first steps at 5 years old in the same week he was diagnosed at six months old.

We give thanks for this day and so many amazing memories made the past seven years. A throw back to the original post with video of Asher’s steps is in the comments.

10/03/2025

Asher’s D-Day (Diagnosis Day).

Twelve - T W E L V E - years ago today the words "Spinal Muscular Atrophy" entered our lives. Spinal Muscular Atrophy or is a genetic disease that destroys the ability to sit, crawl, walk, stand, swallow and even breathe.

This same day T W E L V E years ago we were faced with an incurable disease that statistically threatened to take Asher’s life by the age of two. Yet, today, T W E L V E years later, we have Asher because of hope we were given with , the first FDA approved treatment for SMA.

Undeniably, Asher’s life would not be the same without Spinraza. We are forever thankful for TWELVE YEARS and evermore hopeful one day we will have a cure.

09/26/2025

Back-to-school time has always been a balancing act to support Asher’s new grade level needs. More writing means more hand fatigue. More activities means more energy struggles. We are constantly trying to help Asher succeed with these increased demands.

Yesterday Asher had a “big win.” His charter homeschool coordinator commented that his handwriting is improving.

Asher smiled.

And he reports improved energy and stamina the last two weeks!

09/23/2025

This is disappointing news. Asher has been waiting for this treatment to become available since trial. We remain hopeful. In the meantime, we will continue to seek alternative ways to support motor function with SMA.

Today, Scholar Rock announced that the U.S. Food and Drug Administration (FDA) has delayed the approval with a Complete Response Letter (CRL) for the apitegromab Biologics License Application (BLA) for the treatment of people living with spinal muscular atrophy (SMA). While this is disappointing news, the issues identified by the regulator appear to be due to an unrelated manufacturing plant issue rather than a problem with the clinical data or apitegromab itself. Cure SMA will be working with the FDA and Scholar Rock to identify a timeline for the resolution of these issues.

For more information, please visit: https://www.curesma.org/scholar-rock-receives-news-on-biologics-license-application-bla-for-apitegromab-from-the-u-s-fda/

09/12/2025

Schools in but we’d rather be surfing 🌊🏄‍♂️

A BIG THANKS to for hosting another Surf Away event. This year commemorates 10 years of adaptive surfing for the SMA community and the first year expanding to .

A BIG THANKS to more than a 100 volunteers who make riding waves possible for our most vulnerable.

A BIG THANKS to the for welcoming our surf group to a new location.

A BIG THANKS to for making another day at the beach accessible.

A BIG THANKS to two men who have BIG VISION and BIG HEART.

And the BIGGEST THANKS to our favorite surfer who makes Asher feel safe riding the waves.

Surf on 🤙🏼

09/10/2025

Asher has worked hard his whole life. Even now through a season of regression and loss following his leg break last year, he is still fighting. He hasn’t qualified for another clinical trial since Spinraza in 2013. He is awaiting new drugs coming down the pipeline, but in the meantime his body needs more help. So we are trying to find ways to give him more naturally with new stem cell activation technology. Hoping to see more gains again soon!

09/08/2025

Here we go again. Years ago we unlocked muscle juice (aka Spinraza) to help keep motor neurons alive. Now we are tapping into human peptide GHK. New cell activation technology is paving the way for health promoting effects. The best news, we don’t have to travel the world to find this technology or pay outrageous money to use it. Join us on our journey friends, it’s gonna be great!