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 to be included somehow. As the congress approached I actually became quite nervous at the thought of meeting so many amazing people who are having the same experience of parenthood as me, and are doing what they can to move scientific mountains! The prospect of also meeting the researchers and scientists supporting our fight was a tad overwhelming. 

Saturday 2nd September arrived, and off I flew to Dublin. My flight landed just 30 minutes before Amber, Kim, Leyla and Haikje. I stood with my homemade sign, and honestly I thought I might throw up with excitement at finally meeting my slc6a1 family! Finally they arrived, hugs all round and I could at last relax, friends I’d never met, like friends I’d always known. Andrea and Chiara had already arrived and made their way to Dublin. 

After arrival at the hotel we set off for a quick walk around town and lunch. Amber was so jet lagged, she stayed for a rest. The first evening we met with Katrine Johannesen, another big moment for me, for pre-dinner drinks, and then off for dinner where we met with Andrea and Chiara. Lots of business discussed, by business I mean SLC6A1, research, development, drugs, science, and of course all of our wonderful children! Sadly, jet lag hit Kim like a sledge hammer and she was quite unwell, her body desperate for sleep!

Sunday 3rd September – Amber and Haikje headed off to the morning event at ILAE where Amber was on the stage with 4 others, and spoke about slc6a1, our kids, and all the progress with science so far. At the same time the rest of us met with representatives from a large biotech to tell our stories of slc6a1, how our kids and families are affected, and also about each advocacy group. They kept us intrigued with a carrot of hope and a watch this space-and we are watching!  We returned to the congress to catch the end of Amber and the others session, and during the Q+A, there were 2 doctors that had just diagnosed patients with slc6a1 in the audience, can you believe it. One from Israel and one from Liverpool, England, we spoke to them afterward. The rest of the day was all about networking, we met with Anne De Saint Martin, Katty Kang, Dennis Lal, Katrine Johannesan and many others that have worked on slc6a1 research and development. We were able to meet with a UK doctor briefly from Great Ormond Street, Amy McTague, who I had met with many months ago to discuss supporting our cause. Amber explained a bit more about the Ravicti trial with her, and I was able to set up a meeting for the next morning with Dr McTague, Katty Kang, Katrine Johannesen and the advocates. It was a really great meeting and I hope it will be fruitful moving forward for the UK and Europe.

A loving evening meal followed with the advocates, minus Andrea and Chiara who had already left for Italy, plus Katty and her Husband, celebrating a wonderful wedding anniversary, and Katrine.

Monday 4th was a morning of mingling, reviewing posters, visiting lectures and then rounding off our trip with a sightseeing tour to the countryside, just a beautiful way to finish up the trip together. 

Tuesday 5th I was mostly alone. I attended the conference and some interesting presentations on paediatrics and epilepsy, as well as precision medicine. I then did a little bit of sightseeing and lunch before heading back to the hotel for my taxi to the airport, and much time for reflection on all the amazing networking done in just 3 days. 

For me this trip was important, because it made connections between so many different elements of slc6a1 – families, science, medicine, research, advocacy, epilepsy, countries, bureaucracy, funding and friends. It was so motivating to fill a lot of gaps for me as a parent advocate and non profit for slc6a1. 

Facebook: @answersforarthur

Website: Arthur’s Quest

Sandra McEntee

SLC6A1 Mom to Kat


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