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Sunday, June 27, 2010

GRSF has been born

It is with great pride, hope and excitement, that I introduce to you the Gavin R Stevens Foundation. We had our first board meeting with our new board of directors this past Friday. It was a long 3 hour session, but we had a lot of details to hammer out.

I am ecstatic about the future of the foundation, and the change we hope to bring.

When we were first given Gavin's diagnosis, I was lost. There was literally NO WHERE to turn for support, resources, etc. Everything that we found, was on our own. We didn't know anything about the disease, LCA. We didn't know anyone who was blind, and the list of unanswered questions grew each day.

In the back of my mind, even during the very sad moments, I knew this day would come. I didn't have the knowledge or the strength to do it back then. I don't think any of us did. We have grown, we have accepted, but that doesn't mean that we cannot be a contributor to change.

Our mission is to raise awareness and funds of LCA. While doing so, I would like to promote braille literacy, be a support group for other families, to share information. The list goes on, but the main focus is to raise awareness and money. We will be operating as a full 501-c3 non profit organization.

All of our money raised will be going specifically to research for LCA.

We have a lot of work to do, and this is a ginormous undertaking. I am so proud of my family who has stepped up to help us with this, and our tremendously gracious friends who are by our sides showing their support.

LCA is a very rare disease. That does not mean that we can not be a part of the big picture of the treatment of the disease. Gavin may or may not ever have treatment for LCA. He may posses the gene that may never be able to receive gene therapy. He one day may be able to have treatment, no one knows at this point. What I do know is, I can not sit back and not be an active participant of the big picture. If this benefits other families, and children and individuals with LCA - then we have done our job.

We have come a long way, and it has not been easy. You can read through the archives to see our progress, and to say that it has been a journey, is an understatement. I am proud of our next step. I am thankful to Gavin for giving us the strength to move forward. He is our inspiration, and a part of the bigger picture that I don't even fully understand yet.

Thank you again for your generosity and kindness. I pull strength from knowing your interest is here with our mission, and with Gavin.

The future belongs to those who give the next generation reason for hope.
- Pierre Teilhard de Chardin

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