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…

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…

A New Year

Living with a Rare Disease is like Walking a Tightrope over the Grand Canyon.  Your gaze must stay focused forward on achieving treatment.  You can never look backward or down because you will stumble and fall. In 2019, we stepped out in the midst of our most private heartache to make Read more…

A Day of Celebration

The rare disease world is filled with many high-highs and low-lows with some days being much better than others.  I cling to the happy days when Maxwell learns a new skill, scientists reach a milestone achievement or something wonderfully unexpected happens. Today is one of those happy days… a day Read more…