Advocacy
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 Read more…
Community
Celebrating Like it’s 2017
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…
Advocacy
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 Read more…
Advocacy
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 Read more…
Community
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 Read more…
Advocacy
Merry Christmas
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…
Partners/Philanthropy
For the Birds!
Bird Feeders Galore! Feeding wild birds is the perfect way to add some calm to your life, and to contribute to a great cause! Use discount code “MAX” to get 15% off a bird feeder from MoreBirds.com. Plus, they’ll donate Read more…
Advocacy
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 Read more…
Advocacy
No Research, No Treatment, No Hope
Only 4% of Federal Research Funding is Dedicated to Pediatric Cancer and the 5-year Survival Rate is 2%. Rare Pediatric Diseases are Mostly a Death Sentence for a Life that Never Began. Today is a terrible anniversary for my dear Read more…
Advocacy
Maxwell’s Favorite Thing – Riley
Maxwell was newly diagnosed with SLC6A1 and no doctor knew anything about it. More disheartening, no doctor wanted to learn. I was feverishly reading anything I could get my hands on that could help my innocent little baby. I was full Read more…