Tag Archives: genetic

It’s Rare Disease Week: Please help Mitchell’s “adorable” face be seen around the world…

As my blog title says: EYE BELIEVE IN MIRACLES.  I do… whole-heartedly. How else can anyone explain the leaps and bounds our Curing Retinal Blindness mission has accomplished in less than 4 years?  How else can you explain the phone calls I get and the media releases I read regarding another person, another child, having their blindness reversed, their vision restored?  Some say it is science that makes that happen.  I say, and I know from being deep in the trenches of this for four years:  the miracle lies in the incredible support of donors and advocates, raising the awareness and dollars that we need to fund the science that we need to get the treatments that we need.

CRB1 retinal disease is a very rare disease.  There are only 300 children in the US with the most severe CRB1 disease (LCA) and only 8000 total in the world.  When a disease is THIS rare, a lot of time and attention goes into getting the word out to the world about it.  We need to get the word out to researchers that we have funds  for projects.  We need to get the word out to doctors that we have a support group for their CRB1 patients.  And we need to get the word out to the CRB1 affected families that we have more than hope… we have a plan: treatments and cures for CRB1 retinal disease.

You can help spread awareness of our mission so we can accomplish the goals I listed.  Please click the picture below to watch this 1 minute 28 second video of my youngest blind son (I have two) where he will tell you in his own words what this means to him.  And if you want to help even more, share it with your networks and social circles.  Together we can do so much.  Together we will cure CRB1.

**UPDATE: This was originally posted with the YouTube link… but two days later it was published on Ellen Degenerous’s video site, EllenTube!  Please share this link and help us get some great exposure for our rare disease! http://ellentube.com/videos/1-q9f3hj7m/

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The Eye Believe in Miracles BLOG is written by Kristin Smedley, mom of two sons living with blindness.  If you would like Kristin to speak to your company or organization about moving out of fear, past challenges, Out of Darkness and Into Greatness, send her an email at curingretinalblindness@gmail.com.   If you would like to Join The Mission to help fund cures for retinal diseases please DONATE here.    Together we can do so much.