Picture this: a seven-year-old whirlwind of joy and fearlessness named Everett, whose vibrant spirit and unyielding courage are rewriting the narrative of life with CRB1 blindness. Join this journey...
Kristin Smedley
About Kristin
Kristin Smedley is a professional speaker, author, and advocate for the blind and visually impaired. She holds a BS in Elementary Education and had a thriving career in the field, until a rare eye disease happened. Kristin’s two sons were diagnosed with Leber’s Congenital Amaurosis caused by mutations in the CRB1 gene. In 2009 Kristin added a new life focus: coordinating research toward treatments for this disease. Kristin lives in Bucks County, PA with her three children, Michael, Mitchell and Karissa. When she is not fundraising and raising awareness for CRBF you can find her cheering at Karissa’s soccer and basketball games, crazily applauding Mitchell’s performances on stage, or singing along with Michael and his band at their “gigs”.
Dr. Pete Quinn: A Beacon of Hope in the CRB1 Retinal Disease Journey
In the world of rare diseases, every step forward is monumental, every achievement a beacon of hope. One such beacon in our CRB1 retinal disease community is none other than Dr. Pete Quinn. A couple...
Opening Eyes and Rising Up For Blindness
Earlier this month CRBF was able to share our mission at Novartis Pharmaceutical in Boston. Novartis now owns the rights to Luxturna, a gene therapy that treats LCA-RPE65 blindness, in all countries...
Our “One Word” for 2020
You may have heard about the “One Word” movement. If not, basically, instead of making a New Year’s Resolution (or for many it’s in addition to the resolutions) you choose one word that you will...
Patients Now Have An Opportunity To Drive CRB1 Research and Advocacy
The latest development in moving research forward for CRB1 LCA/RP retinal disease involves a collaborative effort between the CRBF, Sanford Research, and best of all… patients! The CRB1 patient...
CRBF at BIO International Convention 2019!
“Wow.” That’s pretty much the word first time attendees at BIO’s annual convention use, a lot. With over 17,000 people from 49 states and 67 countries in attendance, and expo booths bigger and more...
CRBF Work Is Featured During Rare Disease Week
Welcome to Rare Disease Week! This is a special week where rare disease advocates around the world work toward raising awareness and tackling issues surrounding rare diseases. CRBF will be in...