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
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.

Andrew D. Pucker, OD, PhD, FAAO, FSLS, FBCLA

Dr. Pucker is the Executive Director of Clinical and Medical Sciences at Lexitas Pharma Services. He earned his OD, MS, and PhD degrees from The Ohio State University. His independent research and clinical career has focused on dry eye disease, contact lenses, and myopia development. He has authored over 50 peer-reviewed publications and over 160 editor reviewed columns. Dr. Pucker is a Fellow and Diplomate of the American Academy of Optometry, Fellow of the Scleral Lens Education Society, and Fellow of the British Contact Lens Association

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.

Ambassadors

Leanne Consedine

Ambassador for Australia
Leanne, a courageous AK warrior, mother, teacher, and counsellor who lives in Perth, Western Australia, has overcome extraordinary challenges since contracting bilateral AK in January 2020. She went blind in both eyes while undergoing intensive treatment and surgeries. Ultimately, Leanne was diagnosed with bilateral Acanthamoeba Sclerokeratitis in July 2020. Despite the heartbreaking loss of one eye, she saved her other eye and regained sight. Leanne deeply understands the importance of community support and the strength that comes from shared experiences. She is committed to raising awareness of AK and providing guidance, hope and encouragement to others navigating similar journeys.

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.

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.

Ian West

Ambassador for United Kingdom
Ian, an AK Warrior, chartered engineer and freelance archaeologist residing in Shropshire, England. After contracting AK in 2016 from contaminated water in his contact lenses, he received prompt and effective treatment, resulting in a full recovery. Ever since, he has actively campaigned to increase awareness of the disease and enhance diagnosis and treatment. To further these efforts, he established the AK Community Fund in collaboration with UK Charity Fight for Sight, dedicated to raising funds for these important causes.

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.