In a festive meeting in honor of the five-year anniversary of the Cure ADOA Foundation, fellow sufferers, relatives, speakers and guests from the Netherlands, France and America gathered in the Parkhuys Rosarium to jointly celebrate progress in the fight against Autosomal Dominant Optic Atrophy (ADOA). ). The event not only served as a platform for information exchange and awareness, but also brought joy to all attendees.
A special program was organized for the youngest participants with fun activities, including workshops, games and entertainment.
The day started with an inspiring speech from the board, which briefly reviewed the highlights of the past five years. The first presentations followed, with clinical genetics by Dr. Astrid Plomp and ADOA-plus by Dr. René de Coo.
During lunch, Ambassador Nina Warink again surprised those present by presenting a generous check. This donation will contribute to further research efforts and improve the lives of people affected by ADOA. Heleen van Royen also spoke about her book “Juice”, the first book in the world with a character with ADOA.
After lunch, the second round of presentations took place, with a workshop on energy resilience by Dr. Manon Veldman and Prof. Dr. Ruth van Nispen and a presentation on gene therapy by Prof. Dr. Guy Lenaers.
An information market offered participants the opportunity to become acquainted with various resources and organizations aimed at people with a visual impairment. Parisa Sanandaji was present as a spokeswoman for the American company Stoke Therapeutics, which is researching a treatment for ADOA. Heleen van Royen sold and signed her book “Juice”, with 5 euros from each book sold going to the foundation.
A nice drink afterwards offered the perfect opportunity for participants to network, share experiences and come together in the fight against ADOA. The Cure ADOA Foundation's five-year anniversary was not only a celebration of milestones achieved, but also an affirmation of the global commitment to making a difference in the lives of those affected by this genetic condition.
Thank you to everyone who attended and who has supported the Cure ADOA Foundation over the past five years! Our sincere appreciation also goes out to the Eye Fund for your donation to support this special day.
All participants will soon receive the photos by email via a download link. Below is a preview of the Laughbooth photos!
