About us
The Acanthamoeba Keratitis (AK) Eye Foundation is a non-profit organization that was founded in March 2022 by Juliette Vila Sinclair Spence. Recognizing the lack of information on AK for both patients and the medical community, Juliette became an AK Patient Advocate to give voice to patients like herself. Her efforts have since evolved into the first worldwide foundation that focuses solely on AK.
OUR MISSION
Acanthamoeba Keratitis is a rare disease of immense pain and suffering. Misdiagnosis is common, prevention is possible and support makes all the difference. Our mission is to be a fierce advocate for AK warriors around the world.
OUR GOALS
1
To raise global awareness of Acanthamoeba Keratitis.
2
To provide a hub of information about prevention, diagnosis and treatment.
3
To offer hope and support to AK patients, their family and friends across the world.
OUR TEAM
Board of Directors
Juliette Vila Sinclair Spence
CEO, Founder & Patient Advocate
AK Warrior, Patient Advocate, and Founder & Chairwoman of the Acanthamoeba Keratitis (AK) Eye Foundation. In 2017, Juliette was diagnosed with AK and underwent an emergency corneal transplant to save her eye. Her personal experience has granted her valuable insight into the challenges and recovery process following the disease. With a multicultural background and skills in project management and marketing communication, Juliette is passionate about making a difference and leads the foundation in increasing awareness and providing support to those affected by this rare eye disease.
Marco Schraven
Treasurer & ICT Manager
A board member, treasurer of the AK Eye Foundation, committed to managing the Foundation's financial affairs with care and transparency. With more than 30-year financial industry background, he plays a crucial role in ensuring efficient utilization of the Foundation's resources. Marco has seen the impact of AK on his partner Juliette and their family. This motivates him to be dedicated to the Foundation.
Sabine Widmer
Secretary & Ambassador for Switzerland
Sabine is a specialist teacher in Switzerland, a passionate secretary of the Acanthamoeba Keratitis (AK) Eye Foundation and its Ambassador for Switzerland. She has been fighting against AK and its aftermath since May 2020. Thanks to several surgeries by amazing specialists, multiple therapies and applying eye drops at least every 20 minutes for years, she managed to save her severely damaged eye. Sabine’s journey has given her a unique perspective and deep empathy for those struggling with AK. She is dedicated to raising awareness, providing support to others facing similar challenges and inspiring hope through her unwavering resilience and determination.
Advisory Board
John KG Dart, MA, DM, FRCOphth
Professor John Dart from UCL Institute of Ophthalmology and Moorfields Eye Hospital NHS Foundation Trust, who serves on the AKEF Medical Advisory Board. As a clinical scientist, he is recognized for his collaborative work with other researchers in the laboratory. His research focuses on corneal infections, inflammatory diseases of the ocular surface, and translating these discoveries into clinical trials, with a specialization in Acanthamoeba Keratitis, Pemphigoid, and clinical trials.
Taher Eleiwa, MBBS, PhD
Dr. Eleiwa earned his medical and surgical degrees at Benha University in Egypt, where he also served as faculty for over a decade. He earned his PhD in Cornea and External Eye diseases at the world-renowned Bascom Palmer Eye Institute in the USA. He currently practices as a corneal refractive and cataract surgeon at Magrabi Hospital in Saudi Arabia. Dr. Eleiwa specializes in severe corneal infections, corneal transplantation, and advanced anterior segment disease.
Thomas L. Steinemann, M.D.
Professor Steinemann is a board-certified ophthalmologist specializing in cornea and cataract surgery. He serves as Clinical Professor at Case Western Reserve University and has been a teaching physician and Division Director at MetroHealth since 1999. His work focuses on ocular safety and contact lens policy, including co-leading efforts that secured U.S. federal law regulating all contact lenses as medical devices. He is a voting member of the FDA Ophthalmic Devices Panel and has received multiple AAO awards for his contributions to advocacy and patient safety.
Zachary Reynard, OD, FAAO
Dr. Reynard graduated cum laude from the prestigious advanced scholars’ program at the Salus Pennsylvania College of Optometry. He went on to complete a residency in Cornea and Contact Lenses and a fellowship in Dry Eye Disease at the UAB School of Optometry. He has acted as a sub-investigator in multiple dry eye and contact lens clinical trials, and serves as medical editor for the digital publication EyeMedsNow. Dr. Reynard has treated thousands of patients with contact lens complications, including severe infections and corneal transplants.
Christopher A. Rice, PhD
Dr. Rice is an Assistant Professor at Purdue University, USA. He graduated with a Ph.D. from the University of the West of Scotland in 2014 under the mentorship of Dr. Fiona Henriquez-Mui. His graduate studies were elucidating biochemical drug targets in Acanthamoeba. The Rice Research Group are focused on the discovery and development of anti-amoebic compounds and developing more rapid, sensitive, and specific diagnostics for diseases caused by pathogenic free-living amoebae.
Neil Lagali, PhD
Neil Lagali is Full Professor of Experimental Ophthalmology at Linköping University in Sweden. He leads a team of researchers focusing on acquired and genetic corneal and diseases. He has a special interest in the diagnosis and epidemiology of infectious keratitis, and has been using in vivo confocal microscopy for over 20 years to diagnose Acanthamoeba keratitis cases. His recent interests in this area are in the refinement of diagnostics using artificial intelligence based tools and expert based consensus.
Katie Curro BSc. BA | Phd Candidate
Katie Curro is an ophthalmic technician at Amsterdam UMC, specializing in diagnosing Acanthamoeba keratitis using in vivo confocal microscopy (IVCM). She led a landmark study in 2019 that characterized IVCM patterns before, during, and after treatment, resulting in a practical guide to help clinicians avoid misinterpretation. Katie continues to advance research into amoebic keratitis and in 2025 was awarded the Bayer Ophthalmology Prize for her work exploring non-Acanthamoeba species as potential causes.
Ambassadors
Shari Easthope
Ambassador for Canada
Shari, an AK Warrior, is registered social worker and education assistant based in Calgary, Alberta. In March 2022, she was diagnosed with Acanthamoeba Keratitis (AK), which posed considerable challenges but also fueled her dedication to assist others facing similar struggles. She is fervently committed to raising awareness about AK, providing support to those impacted, and advocating for improved resources and care across Canada.
Alvise Callegari
Ambassador for Italy
Alvise is the Ambassador for Italy and coordinator of the Italian support group. He contracted AK in July 2015 by rinsing his contact lens container with tap water. He was followed by the Corneal Disease Center of the San Raffaele Hospital in Milan and after over 11 months of tough struggle he returned to his job as a rafting guide in Italy and bike tour leader trips all around Europe.
Harmien Huijbens
Ambassador for Netherlands
Harmien, a Dordrecht resident in The Netherlands, began her AK journey in May 2019 with severe pain in her right eye. After consulting an optician, she was referred to an ophthalmologist who diagnosed her with an AK. This led to treatment at The Eye Hospital in Rotterdam, where she faced extensive recovery due to severe corneal damage and vision loss. In July 2020, she underwent a successful corneal transplant and cataract surgery, regaining about 40% of her vision.
Amanda Eckersley
Ambassador for New Zealand
Amanda lives in Wellington, New Zealand and works as a Relationship Manager in the IT Sector.
Originally diagnosed in Feb 2017, from an abrasion on her cornea caused by dust from rebuilding work which was everywhere in Wellington following the 2016 November Kaikoura earthquake. The abrasion and a daily contact lens and water was the magic AK combination. Amanda noticed the lack of local support during the early parts of her treatment, and so reached out to others that had experienced the same symptoms. Feeling isolated and scared is part of the initial journey, so having groups to support through this is very important.
Iñigo San Sebastián
Ambassador for Spain
Iñigo, an AK Warrior residing in Ordizia, Basque Country. In August 2024, he received a diagnosis of AK and has been courageously fighting the disease ever since. It has been determined that his contact lenses were likely the source of the infection. Iñigo is passionate about supporting others who are encountering similar struggles and is dedicated to raising awareness and prevention by sharing his experiences with those in need.
Sabine Widmer
Ambassador for Switzerland
Sabine is a specialist teacher in Switzerland and a board member of the AK Eye Foundation from the time of its inception. She has been fighting against AK and its aftermath since May 2020. Thanks to several surgeries by amazing specialists, multiple therapies and applying eye drops at least every 20 minutes for years, she managed to save her severely damaged eye. Sabine’s journey has given her a unique perspective and deep empathy for those struggling with AK. She is dedicated to raising awareness, providing support to others facing similar challenges and inspiring hope through her unwavering resilience and determination.
Joe Beer
Ambassador for United Kingdom
Joe suffered with AK for a painful but relatively short period (complicated by the covid lockdown), resulting in the decision to go down the removal option. A sports mad Londoner; Ski coach (40 years), horseman & now 1 eyed tennis player. He & his super supportive wife now live near Southend in Essex where he earns a living as a full time guitarist/singer. Feels it is his duty to help share the dangers of this little known but seemily rising parasite. AK is rare, let's together, make it rarer!
Catherine Carpenter
Ambassador for United States
Catherine, a registered nurse with nearly 40 years of experience, has been battling Acanthamoeba Keratitis (AK) since her diagnosis in July 2023. After multiple surgeries, including a corneal transplant, she continues her recovery with Ohio-based specialists. Her firsthand experience with pain management, drop therapy, and patient advocacy makes her a vital resource for others facing AK. As an Ambassador for the AK Eye Foundation, Catherine is dedicated to raising awareness, providing guidance, and offering hope to fellow AK warriors.
