Mixed Nuts: RDH12 and the LCA conference

Quotes

"There is no better way to thank God for your sight than by giving a helping hand to someone in the dark." - Helen Keller
When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, "I used everything you gave me." ~Erma Bombeck
You may never know how strong you are, until being strong is your only choice.- Unknown
Keep your face to the sunshine and you cannot see a shadow' ~Helen Keller
Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.
Don't cry because it's over, smile because it happened."- Dr. Seuss
"Life is 10% what happens to you, and 90% how you react to it."
"God doesn't give children with disabilities to strong people: He gives them to ordinary, everyday people, then He helps the parents to grow stronger through the journey. Raising a child with special needs doesn't TAKE a special family, it MAKES a special family."Author Unknown
I have been driven many times to my knees by the overwhelming conviction that I had nowhere else to go – Abraham Lincoln
Be always at war with your vices, at peace with your neighbors, and let each new year find you a better man. ~ Benjamin Franklin
There are only two ways to live your life. One is as though nothing is a miracle. The other is as if everything is a miracle - Albert Einstein
The journey of a 1000 miles starts with a single step
Sometimes in the middle of an ordinary life, love gives you a fairy tale
Where there is great love, there are always miracles - Willa Cather
The Difficult we can do immediately, the impossible takes a little longer
Doing what you like is freedom. Liking what you do is happiness
There are two lasting bequests we can give our children. One is roots. The other is wings.
Be the change you want to see in the world
Don't tell God how big the storm is, tell the storm how big Your God is..........
Everything has beauty, but not everyone sees it
Fall down seven times - get up eight - unknown
Despite our differences, we sink or swim together
Life may not be the party we expected, but while we are here, we might as well dance
"The man who moves a mountain begins by carrying away small stones." -Confucius

Monday, July 23, 2012

RDH12 and the LCA conference

This past weekend, my mom and I attended the Lebers Congenital Amaurosis conference in Philadelphia. Mat didn't go this time - he and my dad stayed home with the kids.

Me? I don't miss a chance to see friends. Not this girl. So off we went!

My mom sporting the robes they had in our rooms.

We had a great time. I got to meet new families (not RDH12 effected, unfortunately) and it was incredible. Each evening we went out to dinner as a group of 12 or 14 and talked and laughed and just de-stressed. We are never more at home than we are with other families whose children are effected by Lebers Congenital Amaurosis - I don't care what type it is.

Front Row, Amy and her husband Chris, woman from Austrailia and her sister right behind her. (came all the way from Austrailia because her child's gene was just discovered). Back row me, then Troy and Jennifer Stevens, and Lori (from our RDH12 family)

The most exciting was to see my friend Jennifer Stevens and her husband Troy. You have to visit her blog - she is AMAZING. You think I fundraise a ton for Finley? You need to meet this gal.

Jennifer will always be my LCA sole mate and forever friend. When we were at our lowest low, we found Jennifer and her blog. We talked to her on the phone and listened to her positive attitude even though her son is completely blind. We have talked and talked over the last 3 years since Finley was diagnosed, and have now seen each other twice. (Jennifer lives in California).

To say Jennifer is dear to me is not enough words for what she has done for our family. Before we had our RDH12 family, I had her. And we are still each others biggest cheerleaders. Jennifer's son's gene was recently discovered and we could not be more overjoyed for her. Now, like us, she has a direction and a goal. And one day, when we meet at these conferences, our children will SEE each other and it will be amazing.

We didn't learn much that we don't already know about RDH12. Because we are doing all of the funding, we are in the "inner circle" so nothing gets by us. I would say besides being with like minded families and friends this weekend, the biggest thing I took away from it were meeting amazing blind teenagers, and young adults. People who have little to know vision living full and productive lives. We listened to them talk about what it was like to grow up blind and how they developed friendships and independence.

I came away with renewed strength that Finley can do this if a cure doesn't come before it is too late. That she will not have to live with US forever (ha ha). That we need to push her independence so far beyond her comfort zone (and probably ours) to make her successful. This last thing is a MUST, and something that Mat and I are going to dread, I am sure.

I came away with renewed hope. And I was also very proud of us - the RDH12 Fund. So proud of the $600,000 we have raised. So proud of the 14 families and 18 children that are part of our foundation/family.

We did it. We will continue to do it. And I hope, that when the conference comes around in 2014, we will be there to say that RDH12 is in clinical trials with humans and that Finley is MINUTES away from a cure.