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Finding a Cure for Blindness

What is LSA?

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 Connecticut in January 2014, Sofia Sees Hope is a non profit organization generating awareness and raising funds to support research for diagnosis, treatments, and cures for LCA and other rare inherited retinal diseases.

Thank You to These Organizations

for their Ongoing Commitment to Sofia Sees Hope.

 
Mystic Aquarium
Spark
Simply Majestic
Mohegan Sun
Eye Care Expressions
LM Hospital
Dominion
 

Let’s Get Social!

1 week ago
Public comment until July 31 to @icer_review on Voretigene Neparvovec, 1st Gene Therapy Submitted @US_FDA Approval https://t.co/Ypq0N7i9yn
1 week ago
Understanding how #genes, #DNA and proteins lead to inherited retinal disease. https://t.co/TPRkDhviUv #LCA #IRD
2 weeks ago
Important update on treatment for RPE65-mediated inherited retinal disease (IRD). https://t.co/jKjYlAA6ym #LCA #RPE65

Sofia Sees Hope shared National Organization for Rare Disorders, Inc. (NORD)'s photo. ... See MoreSee Less

Your phone calls, emails, tweets, and Facebook posts are still needed today as the Senate deliberates on a vote. We need to #ProtectPatientsNow! Visit rareaction.org/daysofaction to continue advocating to protect #raredisease patients' healthcare. Here is the latest update from our D.C. office in regards to what is happening today: Yesterday, the Senate voted 51 to 50 to move forward with debate on repealing and replacing the Affordable Care Act (ACA). This is concerning because every proposal put forward publicly so far does not adhere to our Principles for Health Coverage Reform. Following this vote to move forward, the Senate considered a version of the Better Care Reconciliation Act (BCRA), which failed by a 57 to 43 margin. As you remember, this bill would lower Medicaid funding by nearly $800 billion over the next ten years, rollback critically important protections for individuals with pre-existing conditions, and result in 22 million fewer individuals with health insurance by 2026. We thank the 57 Senators who chose to vote against this proposal. Today, the Senate will continue considering alternatives to repeal the ACA. One of those alternatives is a bill to repeal the ACA without replacing it, a proposal that we are opposed to. This legislation would result in 32 million fewer individuals insured by 2026, and would abruptly end Medicaid expansion and exchange subsidies two years from enactment when the bill would take effect. The vote on this bill is not expected to succeed. Another rumored alternative from Senate leadership is a “skinny repeal” that would be voted on by the end of the week. This bill would purportedly repeal only a handful of provisions within the ACA, most notably the individual mandate and employer mandate. This proposal also does not adhere to our principles. Without an incentive for healthy individuals to sign up for health insurance, the private marketplaces will only attract those with complex and expensive medical conditions, causing premiums to rise drastically and potentially igniting an insurance “death spiral” that collapses the market. These are the proposals on the table that we are aware of as of early this afternoon, and each would be harmful to the rare disease community. This is why we need you to keep calling, tweeting, posting on Facebook, or however you best communicate with your Senator. Your Senator will decide exactly what to support or oppose in the next few days, and they need to hear your voice.

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