Amber’s Birthday 🎂

My birthday was Saturday which in rare disease world equates to the obligatory fundraiser. This year, I am celebrating a success along with our faithful donors that have made this moment possible. Last December, many gene therapy projects were mostly halted due to social distancing measures. Days continued to pass Read more…

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…

Gratitude

The start of 2021 is beginning with nothing but positivity, joy and a strong belief that miracles happen every day.  Rather than list a slew of resolutions that may or may not be feasible (as COVID taught us),  I have decided to start the year with simple gratitude.  I have 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…

Golf Tournament

The 1st Inaugural Milestones for Maxwell Golf Tournament will be held on August 17th, 2020 at Fossil Trace Golf Course in Golden, Colorado. We have another EXCITING announcement!  The fabulous and talented Denise Plante from The Bull 106.7  will be judging our #MulletsforMaxwell contest! People may enter the contest digitally Read more…