Supporting the LCA and rare retinal disease community
We see a cure for blindness.
What is Leber Congenital Amaurosis (LCA)?
LCA is a rare inherited retinal disease characterized by severe vision loss at birth. While some children are born with little or no vision, others may have significant vision loss in the first few years of life, stable vision for a period of time, and then eventually complete vision loss as the retina deteriorates into total blindness.
What We Do
Founded in 2014, Sofia Sees Hope is a nonprofit 501(c)3 patient advocacy organization dedicated to generating awareness, raising funds for research, and providing support, education and outreach to the LCA and rare inherited retinal disease community.
Thank You to These Organizations
for their Ongoing Commitment to Sofia Sees Hope.
Let’s Get Social!
During our recent Bidding in the Dark online auction, we raised $45K! There's still time to give during #BlindnessAwarenessMonth. Support research, #GeneticTesting, and more. Visit the bidding site to donate or purchase one of our fun 'buy now' items. https://t.co/f1xK9bvw2m
Huge news for our #LCA friends in Canada! Health Canada has approved #Luxturna® (voretigene neparvovec), a 1-time #genetherapy for treatment of vision loss due to inherited #retinal dystrophy caused by confirmed biallelic #RPE65 mutations. https://t.co/lwMUIxYiZ0
Upcoming free webinar: #IRDCounts held by Retina International, 12pm EST, 10/22 on results of a recent study on the cost-of-illness regarding inherited retinal disease in US & Canada. Register:
https://t.co/vJ3MfQQAZm @RetinaInt @FB_Canada @fightblindness #CostofIllnessIRD
Thanks to everyone who joined Bidding in the Dark, an online auction in which you weren't really sure what you were bidding on! You can still donate through Monday night! Our goal is to raise $10,000 in Oct., which is #Blindness Awareness Month. https://t.co/hVY9SqV2AW https://t.co/IWVGFARIO8
First and foremost: Thank you!
Thanks to you, we raised $45K+
During our recent Bidding in the Dark online auction, we raised more than $45,000! When you donate to Sofia Sees Hope, you:
~ Support researchers across the globe who are working to find treatments that will restore vision to those diagnosed with inherited retinal disease.
~Provide access to patients and families who need critical genetic testing.
~Help us connect the patient community with advocacy and education.
There's still time to give, as Blindness Awareness Month lasts until October 31. You can visit the bidding site to make a donation, or to purchase one of our fun 'buy now' items - Sofia Sees Hope-branded Yeti travel mugs or wine tumblers, or an autographed copy of master mixologist Dale DeGroff's new book, Craft of the Cocktail. These purchases include a $70 tax-deductible donation to our organization.
e.givesmart.com/events/ijA/
Huge news for our LCA friends in Canada!
Health Canada has approved Luxturna® (voretigene neparvovec), a one-time gene therapy for the treatment of adult and pediatric patients with vision loss due to inherited retinal dystrophy caused by confirmed biallelic RPE65 mutations and who have sufficient viable retinal cells.
"Being part of tremendous innovations in the treatment of certain eye conditions over the past decades has been incredibly rewarding. Gene therapy heralds the start of a new era for IRDs and I'm thrilled to be part of this historic moment and equally excited to be able to give patients a chance to regain sight with Luxturna," said Dr. Peter Kertes, retina surgeon and Ophthalmologist-in-Chief, Sunnybrook Health Sciences Centre and staff ophthalmologist at SickKids in Toronto.
ow.ly/rum850BUn8k
Health Canada approves first-ever gene replacement therapy, Luxturna®
ow.ly
/CNW Telbec/ - Novartis Pharmaceuticals Canada Inc. is pleased to announce that Health Canada has approved Luxturna® (voretigene neparvovec), a one-time gene...