Our Publications
Blog
Our Most Recent Posts
Our First Year With BPES: What Parents Told Us They Wish They Knew Sooner
Understanding BPES: A Gentle, Parent-Focused Guide to Your Baby’s Diagnosis
Why don’t my babies eyes open?
Our Videos
Maia’s Story – My BPES Journey
Listen to Maia´s parents tell the story of 7 year old Maia´s journey with BPES, including her first surgery at 11 months, which failed, followed by a second successful surgery with Dr Ramon Medel in Spain at 7 years old.
Through Our Eyes – Online Launch
If you missed the live meeting – DO NOT FEAR! In this meeting we discuss our aims and plans for the charity, how we can achieve our goals and most importantly how YOU can get involved and be a part of the positive change!
Pablo’s Story – My BPES Journey
Pablo Christiansen shares his life journey, beginning in Argentina, where he was born with BPES, but went undiagnosed. His family traveled and eventually relocated to Germany, where Pablo underwent sling surgery to help open his eyes and ensure the development of his vision. Listen to his captivating interview and how he lives with the condition.
Frequently Asked Questions with Dr Ramon Medel
In this webinar, Dr Ramon Medel, pioneer of the world-renowned Frontalis Flap method for ptosis surgery, answers an extensive list of Frequently Asked Questions.
Why did we start the charity?
In this video, Vanessa Rodrigo Jakubowski shares insights into the rare eyelid conditions supported by the charity, recounts how she first learned about them, and tells the story of her son Emilio’s journey. She also explains what makes the charity unique and outlines it’s core aims.