As most of you know, our daughter, Finley was diagnosed with Lebers Congenital Amaurosis - a blinding disease - in 2009. We found out about a year later that it was a caused by a RDH12 gene defect. She has about 10% usable vision, is missing her central vision, and she has poor peripheral sight. She will be completely blind sometime in her teenage years without a cure. Our foundation - the RDH12 Fund for Sight - was developed to raise money for research for a cure. We are lucky that the University of Pennsylvania and Dr. Jean Bennett are working on a cure. In 2010 we gave them a grant for $70,000 to start the research, and things are going very well. She has the cure developed, and now is getting ready to take the next step, which is a safety study. That cost $250,000, which our foundation raised this last year.
Next will be to pay for human, clinical trials. This cost will be in the millions, and we will be receiving help from grants for this enormous cost. But the RDH12 Fund for Sight will be pulling their weight to make sure that the clinical trials are successful. We have a goal of $400,000 for this coming year, and so our events have to be bigger than ever. Can we do it? Of course! Because we have amazing friends, family, supporters who help us reach each new goal each year.
We are excited to "step up" our event this year and make it an official timed 5K/10K. We are also going to have a 1 mile fun run. There will be beautiful hand carved trophies for our top finishers. I can't wait for you to see them. They are amazing.
I am getting an early start on the event this year so that everyone has a chance to put the event on their calendar. We don't want you to miss it! It is going to be an amazing time.
We will be having a lot of the same things that we had in the past years. There will be a race shirt, along with your race registration. We will be having lunch. We will have the bounce house, the face painting, and the balloon animals for the kids. We are having it in the same place we did last year- Yough Trail - in the same pavillion, right next to the playground.
We will be having another amazing basket raffle. I already have many volunteers stepping up to make big, beautiful baskets for you to bid on.
And even better - on top of our regular basket raffle, we are having a little more "elite" raffle. It will include a basket that has Disneyworld passes, a basket with an American Girl doll and goodies, a Handmade quilt basket that my mother in law did COMPLETELY by hand (it is really gorgeous), and a bicycle.
And who knows - there may be more BIG add-ons as time goes on.....you will just have to keep an eye on this blog and wait and see.
Another change this year will be our offer for online registration. Due to the fact that we are hoping to draw a larger crowd that includes many avid runners/walkers, we are hoping online registration and credit card payment will help many families and race participants.
In hopefully a week or two, that link will be live on the side of this blog, so that you can go straight to the race site and register. YOU IN NO WAY HAVE TO REGISTER OR PAY ONLINE. It is just an option we thought would be good to add since our race is getting so big.
You CAN do a couple of things. In the beginning of May, our race registrations will go out in the mail. You can use that and mail it back in, or hand deliver it to my parents along with your check payment. Or - you can go online and register, print it out, and mail THAT in with your check. And the last option will be just to register or pay online. All three choices get you to the same goal - coming to our GREAT event for Finley in August.
The event will start at 9am for the 10K run. 9:30am for the 5K run, 9:40 for the 5K walk, and 10am for the 1 mile fun run. Lunch will be served from 11-1pm, and the event will end at 2pm.
The cost of the event will be:
Pre-regirations: $20/person or $55/family (3 people or more) - includes participation in any of the races, a race t-shirt, brailled bookmark, and lunch.
$25/person or $60/family (3 people or more) if you pay on RACE DAY. It includes everything from above.
Spirit Runner: Don't want to run/walk? You can still participate! $18/person or $50/family (3 or more) gets you a race t-shirt, brailled bookmark, and lunch
Lunch only - $5/person. No t-shirt with this option
Children under 3 are free for lunch and registration.
If anyone has any questions, you can email us at firstname.lastname@example.org. Or you can leave a comment below and I will back to you. And keep checking back to this site. I will be going through facebook, and my regular blog, and email to let you know when to expect updates on here as well.
But right now - go to your calendar and mark August 25th, 2012 on your calendar as your day you will help Finley and move us one step closer to a cure for her blindness. We can't do it without your support. All of you should be patting yourselves on the back for how far you have helped us come so far. We are further than we would EVER be if we didn't have your support and your belief in a cure.
And soon, you will get to say that you were part of curing a little girl from ever going blind. That when Finley is an adult, she will look back at this as a bump in the road in life. That when she goes on a hike with her own children, she will get to see the sunset with her own eyes. That she will get to look at the faces of her own babies. That is what we fight for every day. And it will all be because YOU were there with us fighting.