(Here's the website we made:http://www.bpesfoundation.org/)
When Moana was born, we knew something wasn't quite right. At 5 months we learned that she had BPES (Blepharophimosis Ptosis Epicanthus Inversus Syndrome). It took a while and multiple doctor appointments to learn what that meant or to even find a picture with someone with bpes- it was scary and emotional. Here's a blog post about the syndrome.
I also learned that there isn't a great resource for families like me, the path for surgery is still controversial in the field of ophthalmology, and some families cannot afford surgery.
For this reason, I'm starting a foundation! My goal is to start with a website that will connect people with bpes, give information about the syndrome, surgeries people have, and doctors who specialize in it.
I need your help to:
* Do research ($100 for 2 months "select plan" on survey monkey, printing, and postage).
* Make a website ($200).
* Then later incorporate a 501c3 ($500+).
**Any extra funds will go towards the foundation to help fund surgeries, research, or unexpected expenses.
When Moana was born, we knew something wasn't quite right. At 5 months we learned that she had BPES (Blepharophimosis Ptosis Epicanthus Inversus Syndrome). It took a while and multiple doctor appointments to learn what that meant or to even find a picture with someone with bpes- it was scary and emotional. Here's a blog post about the syndrome.
I also learned that there isn't a great resource for families like me, the path for surgery is still controversial in the field of ophthalmology, and some families cannot afford surgery.
For this reason, I'm starting a foundation! My goal is to start with a website that will connect people with bpes, give information about the syndrome, surgeries people have, and doctors who specialize in it.
I need your help to:
* Do research ($100 for 2 months "select plan" on survey monkey, printing, and postage).
* Make a website ($200).
* Then later incorporate a 501c3 ($500+).
**Any extra funds will go towards the foundation to help fund surgeries, research, or unexpected expenses.
Organizer
Anela Holck Deisler
Organizer
Seattle, WA