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.
Patient advocacy, especially for those with rare diseases like AK, plays a vital role in healthcare. The patients face difficulties in receiving appropriate care due to lack of awareness and understanding of their condition. Patient advocacy ensures that the patient perspective is heard and incorporated into healthcare decision-making.
AK Warriors face difficulties in accessing necessary medications and in pain management protocol. They may feel ignored by healthcare providers who are unfamiliar with their condition. Patient advocacy raises awareness about AK, gives AK a voice in policy decisions and supports patients. Collaboration with different stakeholders, including patients, healthcare providers, contact lens manufacturers, and policymakers, ensures that the needs of those with AK are met.
Our aim is to raise awareness for a quick and correct diagnosis in cases with Acanthamoeba Keratitis.
We fight for effective treatment as well as for recognition and support with the pain, psychological issues and financial implications of this serious rare disease.
The Foundation’s goals are to:
- Raise awareness globally about AK and educate on its causes, prevention and symptoms.
- Educate contact lens users, who are at a higher risk of contracting AK, on how to prevent AK
- Provide support and resources for patients, their families and friends.
- Educate the medical community about the patient’s perspective and advocate for improving patient’s outcome.
- Provide patient insights about the impact of AK on a person’s life.
- Raise funds to invest in projects, education and support that make a difference in the course of AK.
Who are we
Juliette Vila Sinclair Spence
Meet Juliette Vila Sinclair Spence: 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.
Meet Marco Schraven: 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.
Meet Sabine Widmer: A board member, Ambassador for Switzerland of the Acanthamoeba Keratitis (AK) Eye Foundation. She has been dealing with AK since May 2020. Despite undergoing four surgeries, multiple therapies, and over 36,000 eye drops in both eyes, she is still fighting to keep her severely damaged eye and regain some vision. As a Swiss teacher, she remains determined and resilient. Sabine’s experience has given her a unique perspective and deep empathy for those struggling with AK, and she has made it her mission to raise awareness about the disease and support those going through the same journey.
Meet Amie Farrell: A board member, and a marketer with experience with consumer goods and food delivery companies. Her journey began after long hours of staring at a screen, which had left her with dry eyes. She had used wet hands to insert her contact lenses, resulting in an AK eye infection. After undergoing 18 months of treatment, Amie was finally discharged by Moorfields. Now Amie is using her marketing knowledge to promote the importance of proper contact lens care and eye health.
Meet Ian West: An honorary board member, 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.