JP Morgan hosts the world’s largest healthcare conference every year in San Francisco.

If you want to learn about the latest innovation and advances in biotech, the conference is the place to be. Not only does it boast world renowned talent, it is also a source of hope for patients.  Miracles are underway in the biotech industry and innovation has no limits.  Diseases that were once spoken about as death sentences are now contemplating numerous curative approaches.  

The companies presenting at JP Morgan are tirelessly working to make these dreams a reality.

Meg Tirrell and Jodi Gralnick from CNBC created a beautiful human interest story about our family’s journey to cure SLC6A1 as patient testimonial in anticipation of the conference.  You can watch the feature story here:

Maxwell Freed CNBC

In thanks to the wonderful people at JP Morgan, Riley and I were able to attend this prestigious conference with the help of Aunt Kelsey.  Aunt Kelsey ensured that Riley had some fun moments in between the meetings. 

I physically wore Maxwell’s story on my backpack as I networked my way through the 10,000 attendees to form relationships that will drive the gene therapy forward.

Maxwell was unfortunately not able to attend.  He has been really struggling with his movement disorder.

As an observer, his movement looks like Parkinson’s but it’s SLC6A1.  He shakes uncontrollably and is unable to follow through with a task.  Maxwell’s brain is telling his body to do something but he just can’t quite get there.  It is heartbreaking to watch his effort and subsequent frustration.  Riley is able to effortlessly activate toys and make Play Doh worms.  Maxwell can see his sister do those things and wants to do them so badly.  We are going in-patient soon at Children’s Hospital to try and get some answers.  Maxwell‘s EEG is abnormal  which means the brain dysfunction has begun.  We are beginning to medicate (even though there are virtual no drugs available) in hopes it will buy us time as we wait for gene therapy.

In the meantime, my family is so thankful for the companies out there working to save lives.

A couple of biotechs were even gracious enough to extend an invitation to tour their labs!

In the Lab

SLC6A1 Gene

I am a mother of a beautiful boy with an SLC6A1 mutation and I am dedicated to finding the best treatment possible for my son.

1 Comment

Harriet. Renner · April 19, 2020 at 6:07 pm

Oh, Amber, you are the most giving person I know. You have worked tirelessly on behalf of Maxwell. I have seen your dedication. I have seen how you reach out in love to so many, myself included. If I had the funds, I would donate enough to get your goal for Maxwell’s healing totally met. I hope to see everything needed for Maxwell; science to find a cure, for large corporations to step up their giving, for everyone who sees the need will step up their giving, and for you and Mark to be encouraged that a cure is coming! Amber, I dearly love you.

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