Michael and Mitchell Smedley

In an earlier post, I mentioned the Smedley family. Michael and Mitchell Smedley are two brothers who both have LCA. Unlike Nomi, Michael and Mitchell's LCA is due to a different gene, CRB1.

The Smedley family is very active in the LCA community, and they work very hard to raise funds and awareness for CRB1 research.

They hold an annual event, Bike the Basin in Richboro Pennsylvania. This years event is coming up on Sunday, September 29, 2013 from 9:30am to 12:00pm at the Northhampton Civic Center.

If you would like to donate, participate or volunteer, you can at www.bikethebasin.org

If you would simply like to donate, you can also go to the website www.crb1.org

Any donation, big or small, helps. 

I have recently had the privilege of speaking to Kristin Smedley, Michael and Mitchell's mom, via email. I would like to share what she said:

"Oh goodness.. I have tears in my eyes reading your message and your blog... it never ceases to amaze me how many wonderful people have come along on our journey :)

Thank you so much for reaching out to me and promoting our mission.

I will keep your family in my prayers as well... you are so blessed to be involved with the CHOP folks and the trial :)  And you mention Dr Dan in the blog post... guess what... he is coming to our huge fundraiser, Bike the Basin and is going to be one of our photographers!  Best part is that he reached out to me and asked if he could help :)  Love that man and that team at CHOP!

PLEASE send me a note when you plan to come to Philly - I am in the Philly area and would love to meet and talk :)

Thanks a million!!!!"