Help Peter found charity for blinding NAION

Peter's Fundraiser For Creation International Charitable Foundation - perhaps with the name NAION 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 1.000 members and needs to become more formalized to be much more effective and taken serious as advocate for NAAION/NAION patients.

I created this fundraiser to fund the US-based incorporation and legal entity creation of 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% of affected possibly in the fellow eye.

The main goals of this NAION or NAAION foundation shall be:

- 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, early detection in general and advice on preventive actions and

- to 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.

INCORPORATION PROCESS
Part of the incorporation of this charity will include me working on establishing a board of volunteer directors from the current online patient and family members as well as any possibly interested physician.

As soon as I know who will volunteer to be part o the board, I will register it in a US state that is most convenient, least costly and easiest to register. Next I will register it with the IRS tax authority to get approved as a charitable organization that allows donors to have their donations to be deducted from taxes. So we are not a deductible 501(c)(3) charity yet but will become one in 2022.

My hope is that I could dispose of sufficient funds that cover our goal amount within the first 3 weeks of the fundraiser but we already have almost 3 times as much a few months into it now.

USE OF FUNDRAISER FUNDS
Most funds from this fundraiser will go towards that incorporation and registration. A small remainder will go towards managing and inttial improvements of the website and creating a basic support hotline manned by volunteers and initial online meetings.

My goal is one of transparency so openness towards our donors and I will therefore regularly communicate how much we received, as well as how much we are spending and for what purpose we spent their donations.

ULTIMATE GOALS
The 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.