Rare Disease Week

Hello again! In continuation of Rare Disease Week, we want to talk specifically about the rare disease that affects our kids and families, SLC6A1 Epileptic Encephalopathy.  SLC6A1 epileptic encephalopathy is a rare neurological condition in children that causes seizures, severe movement and speech disorders, and intellectual disability. As rare disease parents, we simply cannot Read more…

Striving for Mediocrity

Learn to be Thankful for What you Already Have, While you Pursue all that You Want – Jim Rohn          A month ago, I sat in the waiting room as Maxwell finished up his horse therapy session.  Gone are the days where his episodes of jerky, uncontrollable movements could be confused Read more…

JP Morgan Chase

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.  Read more…

The Mouse Has Landed

I will literally do anything to help Maxwell even if it requires smuggling mice internationally. Before I even dive into this blog post, BuzzFeed has done an incredible job telling my story – from developing a gene therapy to creating mutant mice in China – to help cure SLC6A1.  If Read more…

Today was a Good Day

A Big Win For Maxwell This week marked a major milestone in our fight against SLC6A1. Our dedicated team of scientists produced the gene therapy treatment and are actively treating mice. If all goes as hoped, the mice will show improvement and this data will go before the Federal Drug Read more…