We are excited to share the following blog post from Lindsay Randall. Lindsay is the founder of Arthur’s Quest, our partner SLC6A1 community in the United Kingdom. On October 10th, my daughter’s 4th Birthday, I attended the 4th Annual MarketsandMarkets Orphan Drugs and Rare Diseases Conference in London, as a Read more…
Why do you see so many fundraising emails and posts for SLC6A1 Connect? Where does all this money go? I have wondered this since first talking with SLC6A1 Connect CEO and Founder, Amber Freed, after my daughter’s diagnosis in early November 2020. Amber outlined two parallel tracks the organization was Read more…
Dear Family, Friends and Supporters of SLC6A1 Connect, As Rare Disease Day 2023 is upon us, we are still fighting every day for our children to have the best chance they can have at life. We didn’t ask or hope to be here, again. We don’t want to be begging Read more…
Hello again! In continuation of Rare Disease Week, we want to talk specifically about the rare disease that affects our kids and families, SLC6A1 Epileptic Encephalopathy. SLC6A1 epileptic encephalopathy is a rare neurological condition in children that causes seizures, severe movement and speech disorders, and intellectual disability. As rare disease parents, we simply cannot 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 repurpose an FDA approved drug named Ravicti made by Horizon 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 pounds and carrying twins. I could barely walk, Mark put Read more…
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 a whopping 20% of the proceeds to Milestones for Maxwell. This Read more…
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…
I had planned a massive birthday party for the twins with a music class, Peppa the Pig appearance, lots of decorations and of course, good food. Unfortunately, COVID19 reset all expectations and plans for the world. At Some Point You Just Have to Let Go of What You Thought Should Read more…
A Generous Donor is Matching Every Dollar Raised for October & November! We have the most loyal friends that want to see Maxwell & every other affected child cured of SLC6A1. A generous donor is matching up to $50,000 raised during the months of October and November. In the great Read more…