Lindsay Randall is Co Founder and President of SLC6A1 Europe, and also Founder and CEO of SLC6A1 Connect UK.

 

Lindsay formed the UK organisation in 2019 after her son was diagnosed with SLC6A1 in 2018 aged 2. Against the odds her second child was also diagnosed with SLC6A1 aged 1.

 

Lindsay is a paediatric nurse with experience caring for children with complex needs, rare diseases, epilepsy, autism, orthopaedics, general surgery, and practice education. Lindsay is focused on improving the lives of children and young adults with SLC6A1, through support and education, community building, and translational research and development.

Jordan Bastoni is a founding member and Board Member of SLC6A1 Spain, as well as a co-founder and Vice President of SLC6A1 Europe. An audiovisual producer, filmmaker, photographer, and content creator, he brings his professional experience in communication and storytelling to patient advocacy.

 

He became involved in the SLC6A1 community after his daughter, Allegria, was diagnosed with SLC6A1-related neurodevelopmental disorder, at a time when his family found very little information, few experienced professionals, and no clear roadmap.

 

Since then, he has worked to connect families, clinicians, researchers, and institutions across Europe, driven by a clear purpose: not simply to build organisations, but to create more knowledge, better support, and greater opportunities for every person living with SLC6A1.

Michelle Aldini Parise is the founder and President of SLC6A1 Switzerland and co-founder of SLC6A1 Europe.

 

She is a social worker with many years of professional experience supporting people with disabilities. She is also the mother of two adopted daughters with Down syndrome, one of whom lives with SLC6A1-related neurodevelopmental disorder.

 

Combining her professional expertise with her personal experience, Michelle is committed to supporting families, raising awareness, improving access to care, and advancing research for SLC6A1.

Leyla Vardar is the founder and president of SLC6A1 Belgium (VZW GEN), an organisation dedicated to raising awareness of SLC6A1 and supporting families affected by this rare genetic condition.

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Through VZW GEN, Leyla works to connect families, encourage collaboration with healthcare professionals and researchers, and promote access to reliable information, appropriate care, and emerging treatment opportunities.

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She is committed to ensuring that Belgian families have a voice within the wider European and international SLC6A1 community.

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Her belief is simple: no family should feel alone, and every person affected by SLC6A1 deserves understanding, support, and opportunities for a better quality of life.

Haikje Verberk is the mother of Mees, who was diagnosed with SLC6A1-related neurodevelopmental disorder.

Professionally, Haikje is a designer & stylist. Although creativity has always been her greatest passion, the intensive care Mees requires has meant that she has had to put much of her professional career on hold.

In 2019, Haikje and her family founded Stichting Meesterbrein in the Netherlands to raise awareness of SLC6A1 and to support research into new treatments. Through advocacy, fundraising, and connecting families, she works to accelerate research and bring hope to the SLC6A1 community.

Her greatest wish is to see effective treatments that improve the quality of life for every child and family living with SLC6A1.

David Wulf is an entrepreneur, SEO consultant, and personal development coach. 

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When his oldest son Finn was diagnosed with SLC6A1 at the age of three, it had a profound effect on his family, his relationships, and on himself. Learning to carry the numerous daily challenges — and to help Finn, his family, and himself grow through them rather than break under them — is what matters most to David. Above all, he is dedicated to the happiness and fulfillment of his family: his wife Bertille, Finn, and his brother Milo.

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David co-founded SLC6A1 Deutschland e.V., where he currently serves as co-president, and represents Germany as an advocate within SLC6A1 Europe. He is committed to connecting families, raising awareness, improving access to care, and advancing research for SLC6A1 — across Germany and throughout Europe.

SLC6A1 France was founded in 2025 by a group of parents whose children are affected by SLC6A1-related neurodevelopmental disorder. Brought together by their personal experiences, the daily challenges of raising a child with a rare genetic condition, and their determination to find better opportunities for their children, they decided to join forces and create a supportive community.

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As parents, they understand the importance of sharing experiences, supporting one another, and knowing that no family has to face these challenges alone. Their commitment is driven by the desire to connect families, improve access to information and care, raise awareness, and advance research towards a better understanding of SLC6A1-NDD and new therapeutic possibilities.

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Through SLC6A1 France and their involvement in SLC6A1 Europe, they collaborate with families, healthcare professionals, and researchers to advance research and improve the lives of those affected, both in France and across Europe.