This past weekend was the biannual LCA conference for Foundations for Retinal Research (FRR). FRR and Foundations Fighting Blindness (FFB) work together to fund research for LCA. The FRR group was started by a couple who has a child with LCA. They started 12 years ago, and they have told us that the last 5 years things have really started to move for LCA. We would love to see this become an annual conference, now that things are moving more quickly.
We had a wonderful weekend. We did leave the kids behind for this one. It was nice to be able to just concentrate on the information and networking with new friends and not have to worry about little ones for a few days. The conference was right in Philadelphia - not that far of a drive for us. (although the New Jersey turnpike was a parking lot Friday afternoon. Grrrrrr.......Jersey)
We got in a little late Friday night. We had plans to meet some of the families we have "met" online, but we were too late. So Saturday morning, at the beginning of the medical conferences, we finally had a chance to meet some of our new friends.
HERE. They website HERE. And their foundation HERE. I will forever be grateful that we met them online. When Finley was first diagnosed, I hunted for other families with LCA. Jennifer was the first one I found that had a blog. And she is a powerhouse at fundraising. She took their situation and focused on a cure. Just like we wanted to do. She was who introduced me to FFB and Visionwalk. And then to fundraising. And then just to an infectious attitude about doing EVERYTHING we possible can for our kids.
We also had a chance to meet Erin and Robert Drost. I had met Erin online awhile ago - her little boy and Finley look like they could be siblings! We hit it off right away and have kept in touch. It was great to finally meet her. She knew the Stevens Family as well, so they came to dinner with us Saturday night. We had a great time getting to know them better and learn how they are dealing with LCA. Such a strong family. Their little boy has RPE65 - the gene they have discovered a cure for. And he is going to be participating in the clinical trial in a few months. The next time we see them - he will be cured. SO AMAZING! We are so excited for them.
Saturday night - after we were back from a yummy dinner out with the Stevens and Drost families - Mat and I started to talk about wanting to meet other families who had children with the RDH12 mutation. We had seen earlier that day that there were 5 (or 6 - I can't remember) families there with RDH12! I cannot tell you that out of 100 families - that is A LOT for RDH12. Remember - RDH12 only affects 4% of the cases - about 120 people. So 6 there? In the same room? Amazing.
Sunday morning, we had the host announce that Mat and I wanted to meet these families. We stood up, so they could see who we were, and within a few minutes - there were 3 families around us. 4 families - all affected with RDH12 - standing in the same room. I know this sounds crazy, but it was awesome. We have wanted nothing more than to meet other families whose children had the same mutation as Finley. To hear about their children - become friends so that we could always keep in contact about changes in our kids.
So we talked for awhile and decided to have lunch together before going home from the conference. We never did find the other family (or 2?) but are hopeful they will be in contact with us soon. But the oldest of our group was a 10 year old girl. And she has had the SAME SIGHT since she was 3!! She still sees fairly well - doesn't use a cane often, and reads large print. That was so encouraging. Most - we found - had pretty good sight. There was one family that had two children affected, so in all, we had 4 girls, and 1 boy with RDH12 in our group.
We had some pretty exciting conversations, but those will be saved for another post. Sorry - but for now, I will just share who some are! We didn't get a picture of the one family because they couldn't stay for lunch. But here are two others:
This is Maria and Michael Fiore. Their daughter with RDH12 mutation is 4 1/2 years old. They were a really nice couple and so excited to meet other families. Like us - these families hadn't met many people with the RDH12 mutation, so it was exciting to "compare notes". They don't live far from us, so we hope to be able to get together.
Then final thing I wanted to share is the "famous" LCA family we have been getting to know. We "met" them online awhile ago, and we were so happy to meet them in person. The Haas family.
This conference just motivated us more. We know that research is our constant goal. If you have been thinking of donating to our Visionwalk, please do! We WILL cure Finley. The time is coming. She will be a sighted person for life. We cannot do it without all of you. The link to my Visionwalk page is at the top of this blog - please consider contributing to our cause. The more money we give to research, the better her chances. And then you can all pat yourselves on the back and say "I helped to cure Finley". And it will be true.
We now know our total goal. To cure RDH12. To give Finley a life of sight. This coming Saturday I am speaking at the FFB kickoff luncheon. I will be talking about our family, our fundraising, our goal. And we were interviewed for "In Focus" magazine (for retinal research) and that will be coming out soon. A national look at our family and our efforts to raise awareness for LCA. Once the article is out, I will share it with you.
Join us in our efforts. Donate to Finley's
See you Saturday!