This is Peter Leeflang's annual Fundraiser For Funding Annual Expenses of the existing NAAION FOUNDATION (a Delaware Registered International Charitable Foundation) Advocating for Patients with the Rare Blinding NAION (aka NAAION - Nonarteritic anterior ischemic optic neuropathy)
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As you may know, I am an NAAION patient since 2012 who lost overnight 75% of my functional vision due to NAAION/NAION. Never knew that I was prone to it and fellow patients encounter the same life-changing surprise, often overnight.
The added news that the other eye may also go blind (about 1 in 4 chance) and that remains a lifelong sword of Damocles hanging over one's head is even more troubling.
From the outside most seeing people rarely identify us as having this handicap unless we clearly signal it. It is a brutal invisible disease.
After that first vision loss at age 55 I founded several online NAAION/NAION patient support groups in various languages (English, Dutch, French, German), where the largest, the English one, is now quickly heading for 2.000+ members and has become a serious educator and advocate for NAAION/NAION patients and their families.
I created this fundraiser to fund the annual expenses of the US-based foundation and legal entity, the sole existing international charitable foundation for advocating for patients with this rare blinding optic nerve disease called NAAION (non-arteritic anterior optic ischemic neuropathy - also called NAION or popularly 'eye stroke' although it is not really a stroke), which affects 2.6 to 10.3 people in 100,000 and results in overnight sudden still irreparable damage to the optic nerve with corresponding vision loss in one eye and later with 15-25% chance of being affected possibly in the fellow eye.
The main goals of this NAION or NAAION foundation are currently:
- to get international standards of diagnosis and care established as now none exist and the professional NAAION/NAION care field is a total chaos also lacking a sense of urgency to take care of us and limit damage,
- to also promote standards of preventive testing (is well possible to prevent even the first NAAION episode by determining the cup to disc ratio and presence of optic disc drusen), early detection in general and advice on preventive actions and
- to starting next year increase research into treatment of and testing for this disease, where our focus will for starters be in supporting treatments for the acute phase and the development of optic nerve regenerative techniques.
The foundation will also eventually expand its current very basic website (www.naaion.org) with more information and functionality and allow supporting the activities of the growing current Facebook-based NAAION support group of nearly 970 patients, which was founded end of 2016, where patients, friends and family meet and help one another to:
- reduce damage during the first weeks of the acute phase of NAAION/NAION,
- prevent a subsequent NAAION/NAION episode as well as
- handling the accompanying symptoms and consequences of vision limitations.
Of course this means that this foundation will in addition be a formal vehicle to gain donors for the foundation its activities
TAX DEDUCTIBILITY
We are now a US tax deductible 501(c)(3) charity.
USE OF FUNDRAISER FUNDS
Most of these funds from this fundraiser will go towards that annual costs of corporate registration in Delaware, the annual website hosting fees, and the annual registered agent costs which allow having an official US address plus phone number.
ULTIMATE GOALS
The NAAION Foundation's ultimate goal will be to help reduce the numbers of both unilaterally and bilaterally affected NAAION/NAION patients as well as to reduce the loss of vision with those affected.
It will also seek to help NAAION/NAION patients and their families deal more easily with the consequences of this vision reducing disease.
MY HOPE
For me and my fellow patients I also hope to help protect each other with help of this new foundation from being confronted with a second NAAION/NAAION episode that would render us completely blind, an even bigger life-changing event which 1 in 4 of us will otherwise encounter. Being blind will often otherwise result in losing one's independence big time, like not being able to drive, having to move to an area with public transportation, seeing one's productivity so earning power partially or often totally lost so having no earned income,but also bumping inadvertendly into things and people, falling over objects, becoming isolated , seeing relationships go south when understanding lacks and a lot more losses. No one would wish that on anyone when it happens totally not through one's own fault.