Author: Lindsay Randall of Arthur’s Quest, United Kingdom I was very excited to receive a link from our wonderful Portuguese mother Julia Ferrer, for an Orphan Drug Conference called REPO4EU. I had never heard of it before, but thought this title sounds like exactly what we are trying to do Read more…
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…
by Lindsay Dilley, founder of Arthur’s Quest and SLC6A1 Connect UK After a disappointing rejection of our submission to the International League Against Epilepsy (ILAE) for a special interest session on SLC6A1, I was delighted to hear that the advocates were going to attend anyway, and that Amber was pushing 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…
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…
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…
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 for these innocent kids. This year also brought out a Read more…