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Saturday, January 29, 2011

GRSF update

Since it's January, I thought I would lay out some upcoming info regarding our foundation. As you may know, we started a non-profit to raise research money for LCA. We are laying the tracks before the train comes, but we feel we have a necessary role, in raising awareness. There is no cure for LCA, but medical science reminds us, we have every reason to be hopeful!

So, today, we fundraise. We raise awareness. We love it, and feel we are doing a small role in the process of Leber's Congenital Amaurosis progression to one day have treatment.

I have never been so passionate about anything. The core of who I am, is a charity person. Before the kids were born, I was very active with UNICEF. It's ironic, that my life is now affected personally, with a reason to turn my efforts, to something personal.

Life works it's ways. I tell ya!

Anyhow, I don't detail everything in the blog like I used to when we first started trying to get the word out. This has turned into it's own force, and I am seriously just trying to keep up with the day to day functions of the foundation. I could not write a post for every event, even if I wanted to. Maybe I should start documenting video blogs? Hmmmm.... Not to share with the world, but for my documentation. Heaven knows I dislike my mug on camera. LOL

Coming up we have about 15 events planned so far for the year, with about 8 more tenative that I don't have the dates on. We have a charity golf tournament (possibly 2), in which we are the beneficiary, as well as the Irvine Lake Mud Run, in which we are the beneficiary (for the whole year). All of our events are on our events page on our website. Not even a third of those are up, so bear with us. :) Events are only part of everything. We have grant writing, sponsorships, and corporate relationships that we have to keep up on. That's all the behind the scenes stuff, that takes up most of our time. I am learning so much, and love it.

Our wonderful relationship continues with the Foundation Fighting Blindness. I have been asked to be the honorary speaker at this years Dinner in the Dark in Orange County. We have also been asked to be the Family Walk Chair for this years, VisionWalk. With us being so busy fundraising for LCA Research, I honestly told them I could not handle trying to get corporate sponsorships like I have in the past, as the Walk Chair. We were thrilled they offered us this position, as I love reaching out to families. Regardless of where we are with our foundation, or the place in our lives, I will ALWAYS participate in VisionWalk. FFB was our shining light during a very, very sad time of confusion and devastation, when we learned about Gavin's diagnosis. I will always cherish my personal relationship I have in my heart for FFB, and the wonderful people I have encountered, who are on the board with me at the OC Chapter, FFB.

Our most exciting news, is Tour de Sight. If you don't know about it, please read what people are willing to do for us. A group of riders are taking about 40 days out of their lives, to ride a bike (bicycle) and pedal across the country to help us raise awarness of LCA. These people have children, they are married, they have careers and loved ones. I am still speechless! Anyhow, it's exciting, and it's happening in April of 2012. Our goal of raising $100,000 has been set, but they are all convinced of surpassing that. We will be reaching out to people as we pass through each state, we have news media getting lined up, and sponsors. Anyhow, I can go on and on, but check out our riders. Add our Tour de Sight page on Facebook, and keep up with our adventure!


Going through past posts, it's interesting to see how the process of dealing with such a devastating blow (Gavin's diagnosis), plays itself out. Things begin to unfold, and you really don't see how far you have come, until I reread some of the blog posts. Am I still sad that my son lives in darkness? Absolutely. Am I dealing with it much better than I ever thought I would? Absolutely. Am I reminded every day, many times throughout the day? Of course. It's hard to overlook when he falls, bumps, or cries because he cannot see the ball he is searching for, when it is half an inch from his leg. Do I still long to lock eyes with my son? Everyday.

Do I appreciate who he is, and push everyday to make sure he is not defined by his blindness? More than ever.

Many others have been fighting for LCA Research, and a cure, and treatment before Gavin was even born. I feel it is our duty to fight, not just for Gavin, but for those who will also be faced with Leber's Congenital Amaurosis.

Gavin is happy, he is healthy, and he is here. I can't ask for much more, but I can ask that one day there be an option for him. That option is treatment.

I will continue to hope for treatment. I will continue to trust medical science. I will continue to do my part, and fight for that option to one day be a reality for him, as long as God allows.

2 comments:

  1. Incredible! I seriosly do not know how you keep such a centered focus with your family, and yet still be able to treat this as ur job. You all are always so welcoming. Landen and Gavin are so lucky to have u as parents.

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  2. Do you know what states you will be traveling through?

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