about us
The Acanthamoeba Keratitis (AK) Eye Foundation was founded in March 2022, by our Founder and Chairwoman Juliette Vila Sinclair Spence. Juliette is an AK Warrior whose life changed in 2017 when she contracted the rare eye disease AK. Based on her experience, and what she has seen other AK warriors experience, she recognised a real gap in information across both AK patients and the medical community. She made it her mission to become an AK Patient Advocate, to give patients a voice, and her efforts have since evolved into the first worldwide foundation that gives full focus to AK.
Our Mission
There are two ambitions of the AK Eye Foundation. Firstly, the Foundation seeks to raise Global Awareness of Acanthamoeba Keratitis (AK). Secondly, it aims to educate contact lens users and the medical community about AK, specifically risk of contraction and prevention.
AK is a rare disease that contact lens users are at higher risk of contracting as the lens can act to trap amoeba parasites living in water. Treatment to combat the amoeba’s impact on the eye of a patient is generally slow, painful, and not always successful. We plan to employ research-backed insights and investment to increase the knowledge of AK amongst the public and the medical community.
IT’S OUR HOPE
Fewer people contract AK and Fewer AK Warriors
Standardized protocol for diagnosis and treatment.
Understanding and a protocol for pain management.
Recognition and support for the psychological and financial implications of AK.
Our Goals
Raise Awareness
Raise Awareness of Acanthamoeba Keratitis amongst the broad, global stakeholders.
Prevention
Educate how it can be contracted and prevented amongst contact lens users.
Support
Support AK warriors (patients), family and friends that are going through it.
Patient Perspective
Advocate and build patient insights about the impact AK has on a person.
Research
Employ research-supported insights to educate the medical community.
Funds
Raise funds to enable us to invest behind our goals and carry on the projects.
Who are we?
Juliette Vila Sinclair Spence
Chairwoman – Board Member
Juliette is a passionate AK Warrior, Patient Advocate, as well as the Founder and Chairwoman of Acanthamoeba Keratitis (AK) Eye Foundation. She brings personal and first-hand experience of what it means to be affected by Acanthamoeba Keratitis in 2017, having to have an emergency (therapeutical) corneal transplant to save her eye, as well as its challenges and aftermath. She not only brings her passion and determination to make a difference, but also her multicultural background, project management and marketing communication skills ability to the foundation.
Marco Schraven
Treasurer – Board Member
Marco is the partner of Juliette. Appointed treasurer of the Acanthamoeba Keratitis Eye Foundation. Seeing the destructive nature of this horrible eye rare disease up-close and the impact on their family, he is as committed to the cause as his partner. Besides acting as treasurer, he is also an ICT Manager. He has a record of accomplishment of 30 years in the financial industry, in debt collection, domestic and international.
Sabine Widmer
Secretary – Board Member
Sabine is an AK Warrior and a teacher from Switzerland, who knows what it is like to go through the darkest time of AK without any support. Sabine contracted AK in May 2020 and is still fighting to keep her eye and even gain some vision in the severely damaged organ. So far, that meant having had four surgeries involving both eyes, several therapies and more than 36’000 eye drops. Thanks to the Support group of the Foundation and her experience of going through AK, she has made it her mission to raise awareness and help others in the journey.
Amie Farrell
Marcom Advisory – Board Member
Amie is an AK Warrior and marketer. She has +10 years of brand marketing experience across consumer goods and food delivery companies. It was early in her career at Deliveroo that Amie contracted AK in the UK’s Peak District. Long hours at a screen had dried her eyes and she was using wet hands to insert her contact lenses. After 18 months of treatment Amie has now been discharged by Moorfields and is committed to using her marketing knowledge to drive awareness of contact lens health.
Ian West
Fundraiser – Advisory Member
Ian West is an AK Warrior, as well as a chartered engineer and freelance archaeologist, living in Shropshire, England. He contracted AK in 2016, due to water contamination of his contact lenses but, thanks to early correct diagnosis and treatment, made a good recovery. Since then, he has been campaigning to raise awareness of the disease and improve its diagnosis and treatment and set up the AK Community Fund in partnership with the UK Charity Fight for Sight to raise money for these purposes.