Our team
SATB2 Europe is run by a group of parents who know firsthand the challenges and hopes that come with SAS. What brings us together is the love for our children and the belief that every person with SAS deserves the chance to live a healthier, happier life.
With passion and determination, we work to improve health prospects, raise awareness, and foster a strong community of support. Together, we welcome you to be part of our mission and help us create a brighter future for all those living with SAS.
Erika Stariha
President, Management Team Member & Co-Founder
Erika’s background is in clinical pharmacy and through her career she has gained great experience in clinical research, clinical trials and implementing quality and safety management in clinical environments.
Erika’s son was the first SAS case in their country and there was nobody within the health system who knew what it meant. The experience of being undiagnosed for several years and then alone in the management of an extremely rare disorder has motivated Erika to change the game for other affected families. Her goal is to create a European clinical SAS network to provide the best care and a great foundation for clinical research and clinical trials.
She brings excellent organisational and research skills, high energy and knowledge of the European healthcare system to SATB2 Europe.
Jenny-Li Örsell
Management Team Member & Co-Founder
Jenny-Li found her passion for science through her daughter’s SAS diagnosis. She has now published medical articles on SATB2-Associated Ayndrome and runs the SATB2 Syndrome Research Community to bridge the gap between researchers and caregivers.
Jenny-Li is convinced that treatments and cures for SAS patients are to be found, and that caregivers can help accelerate discovery and development of therapies that can reverse the symptoms. With a Masters degree in computer science and a Mensa membership she brings analytical skills in addition to her SATB2 expertise to our team.
Paul Maksys
Management Team Member & Co-Founder
Since the SATB2 syndrome diagnosis, Paul has been looking for ways to support the development of therapies and treatments for his daughter. Not having a medical background, he instead chose to help others realize their ideas offering his analytical skills and finance expertise. One of his first accomplishments was to ignite the international funding towards patient-derived hiPSCs for SAS research.
Paul has a finance background and has held various finance leadership positions in different European countries in the past years.
Barber Tinselboer
Management Team Member
Barber is a physician for people with Intellectual Disabilities (ID). In the Netherlands, this is a medical specialty, created to provide better medical care to people with ID. Her work is comprised mostly of treating the comorbid conditions in people with ID like epilepsy, behavioural issues, psychiatric disorders and additional physical problems.
She works at ‘s Heeren Loo in Apeldoorn, an organization that provides care, services and treatment for people with ID. She also has a son with SATB2-associated syndrome.
Luis Fatela
Team Member
Luis has a background in business management and has spent his entire professional career in the pharmaceutical industry and contract research organisations.
One of his grandchildren was diagnosed with SATB2 and since then he has tried to help by identifying hospital institutions with expertise in rare diseases, patient organisations and current legislation.
Luis helped set up the SATB2 Portugal group and endeavours to keep it dynamic and participative.
Monica Terracciano
Team Member
Monica is an Assistant Professor in chemistry and biomedical applications, with a strong background in biotechnological research. Her academic work focuses on developing innovative diagnostic and therapeutic solutions through advanced technologies.
Monica became part of the SAS community after her son was diagnosed. This life-changing experience brought a new perspective to her scientific work and inspired her to use her expertise to support others walking a similar path.
She is committed to raising awareness, encouraging collaboration, and contributing to efforts that can improve the quality of life for individuals and families living with rare syndromes. Through her work, Monica aims to help bridge the gap between science and everyday life, bringing knowledge closer to those who need it most.
Paulina Żamejć
Team Member
Paulina used to work in marketing, but after her son was born, she transitioned into e-commerce for 10 years.
Recently her son inspired her to return to her roots - she is originally a German teacher. She now works at a school, which allows her to be more present for Łukasz while contributing to a more supportive future for all individuals within the SAS community.
Sonia Zaragoza
Team Member
Sonia has been working for a multinational company as a manager of projects within the area of marketing, sales and HR. When she joined our team she was already running corporate communication and marketing at Asociación Satb2 in Spain, and she knows all it takes to create noise and become visible in the media landscape.
Sonia is the proud mother of a young SAS boy, passionate about bringing a diagnosis to all SAS individuals and to make SATB2-Associated Syndrome known to a wider audience.
"Getting a rare disorder diagnosis is not a dead end, it’s a new beginning!"
Sonia is generous, fast, creative and make everyone around her enjoy the fun of working together.
Nicklas Kittelmann
IT Support & Co-Founder
Nicklas’ background is as a senior manager within the IT industry. He used to question what he as a parent could do to help brighten the future of his daughter with SAS. Learning more about the work involved to accelerate research and get treatments from bench to bedside, he realised that all disciplines count – even the non-medical ones.
Nicklas’ solid experience with leadership of distributed teams and his broad IT skills are a much welcome contribution to SATB2 Europe. His current goal is to make the work of the team run smoothly, and full speed ahead!
Sandra Maksys
Team Member & Co-Founder
Sandra is a medical doctor by profession, and knows what daily contact with patients looks like from the clinician’s perspective. When her little daughter had to go through numerous meetings at clinics and hospitals to get a SAS diagnosis, Sandra learnt the hard way what it means to be the client in these settings. Fortunately her education and professional experience was of great help to discuss her daughter’s condition and possible medication with other doctors.
Now, Sandra wants to use her double experiences to support other families of SAS individuals.
We are grateful to have Sandra as a team member as she is a great asset in the work of optimizing care and connect specialists within Europe. She always brings a smile to our meetings!
Are you a caregiver who'd change the world for your SAS child? Then we would love to hear from you, whatever your background, experience and skills are! We are always looking for likeminded people, and dedication is your strongest merit. Reach out to us at