Hi Friends!

Last year Andy (Zoey's Uncle) and Andrew (Family Friend) completed an ultramarathon in honor of Zoey to raise awareness and funds to help with her expenses for therapies throughout the year. This year we wanted to support Zoey and her journey with SMA as a fun way to involve as many friends and family from our community! We are doing a Lift-A-Thon where we plan on collectively lifting 2.1 million pounds TOGETHER!

Why 2.1 million pounds? Let’s get everyone up to speed.

Zoey has a genetic condition called Spinal Muscular Atrophy. Her body is missing a gene from her DNA that is responsible for making a protein to fuel her motor neurons which thus fuel her muscles. But with incredible medical advancements, Zoey was given a 1x dose of an artificial gene () just 10 days after she was diagnosed. At the time of dosing, this drug, Zolgensma, had only been FDA approved for just over 1 year! Brand new on the market!! But without it, her body would continue deteriorate and she would loose all muscle control (sitting, breathing, smiling, swallowing). In fact, before there was a treatment for SMA, kids were given a 2 year life expectancy. (SMA has always been compared to a children’s version of ALS.)

The logistics of Zolgensma is it gives an artificial copy of the SMN1 gene her body was missing into all her functioning motor neurons, so her body can make the SMN protein on its own! It can’t fix what’s already damaged, but it’s supposed to keep the remaining motor neurons alive! There are still so many unknowns since it is so new (which is very scary) but so incredibly blessed to have received this gene therapy before it was too late.

So to circle back to our Lift-A-Thon & Zolgensma, this life-saving artificial gene therapy she received, guess what it costs… $2.1 million dollars!! Her one time dose was so tiny too, only 30mL! Pretty crazy.

Zolgensma has been working miracles with kids with SMA. When Zoey was diagnosed she wasn’t able to even bear weight on her legs. But today she is able to walk with her braces! She works harder than anyone- literally defying the odds 1 day at a time. According to “history” Zoey should only reach the milestone of sitting before she starts to progressively loose all muscle abilities…but if you know her, nothing can stop her!! Her life would look 100% different without receiving that tiny but mighty $2.1 million dollar dose of Zolgensma.

However, as incredible as Zoey is doing, she still fatigues easily when walking longer distances. Our current set-up has been to bring our double stroller everywhere and she rides in the stroller when she gets tired. But it’s getting tricker the older she gets, because she’s not “a baby” and doesn’t want to constantly have to be in a “stroller” since she’s 6 yrs old. It’s tough when her little sister can run around anywhere and everywhere and Zoey is always 50 steps behind her. Her family recently went to the CureSMA conference in California and noticed so many kiddos like her on this fancy specialized electric scooter called Travel Scoot. They instantly knew this was the missing piece in making her life easier and more of an age appropriate way to get around! (Shopping, zoo, family walks, going to the park, airports, etc.)

The Travel Scoot sells for around $3000. Obviously nothing insurance covers. Any money raised via the Lift-A-Thon will go directly towards Zoey’s Travel Scoot!! 

To learn more on the Travel Scoot- here is the link!

https://travelscootusa.com/the-escape/

The event will be hosted at:

August 16 - ALL DAY

132 North Rhode Island Avenue

Morton IL 61550

This event is going to run ALL day. Come and go as you please and help us lift as much as you can towards our goal!

We will be hosting a 2.1 mile walk that morning at 9am. The walk will go towards the amount of weight lifted.

We appreciate your support and helping us spread awareness. If you could, please say a prayer for that day and everyone participating, purchase a shirt, or donate if you're able to do so and help us reach our goals! :)

Here is a link to purchase t-shirts that will be available for pick up that day.

https://thecottontop.com/116-team-zoey