Dear SLC6A1 Supporters, The Star Studded, Milestones For Maxwell, golf tournament is this Thursday (the 29th) and our silent auction just went live! Do you need a private condo in Beaver Creek for a weekend? Yoga leggings for a chihuahua? Read more…
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 Read more…
I was exactly 34 weeks pregnant, and it was the day of my maternity photoshoot. Our sweet photographer said 34 weeks is the perfect time because women are glowing, but that is not the case when you are 5’2, 100 Read more…
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 Read more…
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 Read more…
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 Read more…
SLC6A1 families from Kansas City, Iowa, New York City, Belgium, and the Netherlands all headed to Dallas to visit us! We had some belly laughs and created unforgettable memories. We all share a bond only understood by fellow parents and Read more…
Today was too good not to share!!! I had a meeting with my congressional representative, the honorable Van Taylor to discuss rare disease advocacy at the state and national level. Rare diseases are considered too rare to care by pharma, Read more…
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 Read more…
We all need a little hope as we close out this incredibly unique year. 2020 brought a lot of pain and setbacks to our fight for a cure, but it did not squash our hope and determination to keep fighting Read more…