Living With LCA: Enzo’s Story
Enzo was born in 2014 in Lausanne, Switzerland, with a clubfoot. He immediately received physical therapy, then a plaster cast for three months and one minor surgery. His parents – Laura [...]
Alan’s Story: Gaining Independence with Aira Technology
By Sally Higginson Trust me when I tell you to grab a tissue. Or roll down your sleeves and get ready to wipe. Me? My eyes are welling up even as I type. Recently, I witnessed a miracle. I’ll [...]
Attention LCA Families: Sign up to receive the LCA Family Newsletter!
Sofia Sees Hope, a nonprofit focused on families living with Leber congenital amaurousis (LCA), will launch a quarterly newsletter in the fall of 2017. SSH funds research for diagnosis, [...]
Living with LCA: Juliet’s Story
Scott and Heather Soady and big sister Gillian welcomed baby Juliet two years ago, and life progressed in an understandably hectic way for the San Diego parents who also are practicing lawyers. [...]
Feeling the Mission
There was nothing in my life to prepare me for the experience of Dinner in the Dark. I’ve supported many nonprofits, as a board member, consultant, and donor. I’ve been to many luncheons and [...]
Love Golf? Hate Golf? Both Can Help Cure IRDs and LCA!
Birdies for Charity is a great program that we joined this year to help us raise awareness about Leber congenital amaurosis (LCA) and to help raise funds to cure LCA and other rare inherited [...]
Flexibility, Growth and Drive Cure This Rare Disease
Being blind, or living with someone who is, requires all sorts of adaptation and flexibility. Creating a nonprofit to cure blindness caused by rare inherited retinal diseases like Leber [...]
What’s for Dinner?
We’ve just finalized the Dinner in the Dark menu for 2017! If you’ve never been to our Dinner in the Dark event, this is our primary fundraiser for the year and is critical to our ability to [...]
To Test or Not To Test: 5 reasons we think you can and should get a genetic diagnosis for your IRD
Hey LCA or IRD family, does any of this sound familiar? You or your child has received a clinical diagnosis of LCA (leber congenital amaurosis), RP (retinitis pigmentosa), cone-rod dystrophy, or [...]
It’s April Fool’s Day, and we’ve got a great post to share with you!
“We can all make our lives much happier if we choose to laugh, live our lives more intentionally and find joy in the little things.” The quote above is from our friend, Jack McCormick’s blog. You [...]