A Big Win

We’re so excited to share a big win for our community.  This is happening because of our selfless donors that walk alongside of us every single day.  In thanks to our support, SLC6A1 Connect is funding a clinical trial to repurpose an FDA approved drug named Ravicti made by Horizon Read more…

The Girl That Changed Everything

Mila was born 10 years ago in Boulder, Colorado to an adoring mother named Julia Vitarello.  Beautiful and energetic from the start, Mila was a little girl whose personality drew others in naturally.  Even as a three-year-old, she used her captivating smile, repertoire of Frozen songs and her soft touch Read more…

Sorrow

Our small, closely knit, rare disease community lost one of our heroes. I have contemplated sharing this information because frankly, it makes it hard to breathe. When I saw the other mother’s post, my mind nearly imploded with grief and fear. I tried to push it out of mind so Read more…

The Greater Good

2020 has been nothing short of a dumpster fire of a year.  I kept joking that Biblical locusts were about to descend upon the world.  The joke was pretty funny until videos of locusts taking over the Middle East interrupted my nightly celebrity news on Page Six.   But what Read more…

Home Cuts For A Cure

Home Cuts for A Cure

Who Needs a Haircut!?! Especially a Home Cut!?! We have decided to have some fun with our hair while raising awareness for SLC6A1.  I have never laughed so hard in my life with #HomeCutsForACure. Exhibit A: Mark Freed with a Mullet. Everyone that knows Mark well would barely recognize him 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…

The Daily Blast Live

I recently shared my story with the national talk show, The Daily Blast Live. I have loved the show for a very long time and actually followed two of their hosts, Sam Schacher and Jeff Schroder on Instagram forever. I would recognize their families on the street and probably ask Read more…