OUR VISION AND MISSION...
HELP EVERY BABY, CHILD AND ADULT WHOSE LIFE IS NEGATIVELY AFFECTED BY BPES, PTOSIS OR MGJWS
conditions that we work with
01.
PTOSIS
Ptosis is a drooping of the upper eyelid. This may affect just one or both eyes. The severity is different in every case – it may be hardly noticeable or it may cover some or all of the pupil. Some people are born with it and some acquire it for one of various reasons. Ptosis can be suffered alone and is also part of BPES and MGJWS.
02.
BPES
Blepharofimosis-Ptosis-Epicanthus Inversus Syndrome is a rare condition affecting the eyelids and, in some females, the ovaries. A mutation in the FOXL2 gene during pregnancy causes lack of development of muscle in the eyelid, causing Ptosis, plus narrow eyes, widely set eyes and an upward fold of skin of the inner lower eyelids. BPES can be genetic or random, and is congenital (present at birth).
03.
MGJWS
Marcus Gunn Jaw Winking Syndrome is a rare genetic disorder that is usually present at birth. It is characterized by the movement of one upper eyelid in a rapid rising motion each time the jaw moves, usually alongside ptosis on the same side. It may be congenital (from birth) or acquired.
What We DO!
PROVIDE INFORMATION
We know how scary it is to have a baby with one of these conditions and have never heard of it before. There is very little information available online, and even less from the doctors and pediatricians. We aim to provide comprehensive information on all these conditions.
GIVE ADVICE
Once you have your diagnosis, it is important to find out your options. There are different options available, and we aim to provide signposts to the best available resources for this.
SUPPORT
If you do decide to go down the surgery route, we can provide assistance on finding the best quality surgery available to avoid failed procedures, scarring and the need for multiple surgeries throughout childhood.
PROVIDE FINANCIAL ASSISTANCE
The best surgery options can be expensive, and we provide financial assistance in some cases for those families most in need.
EDUCATE
We have a goal of 1,000,000 people recognizing these conditions, and doctors and pediatricians learning about them, through spreading awareness via talks and events.
REPRESENT AND BUILD COMMUNITIES
We offer a voice to represent you. To spread awareness, so you can avoid being asked awkward and upsetting questions. We offer opportunities to meet through our events, to get to know others in your situation, and help build your confidence in the world.