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!
@fightblindess & @FB_Canada have extended the survey about the economic costs associated with #IRDs, incl #LCA, #RP, #Stargardt, #Usher and more. The survey now closes on June 28.
PLEASE USE THE LINK BELOW TO TAKE THE SURVEY.
https://t.co/gZX86lxxgW
Will You Join Us at VISIONS 2020? It's Virtual! June 25-27. Already booked are a wide range of science and research presentations, practical adapting and thriving sessions and an opportunity to connect with others from across the country.
https://t.co/sRNPATfnWM
Please take the @fightblindness and @FB_Canada survey about economic costs associated with #IRDs in the US and Canada. It's part of a study called “IRD COUNTS,” to inform policymakers about the significant financial strain caused by IRDs. https://t.co/gZX86lxxgW
Just as Chuck and Laura founded Sofia Sees Hope after Sofia's LCA diagnosis, so too has Drew's family formed an NPO to support research into his form of LCA, the CRX gene variation.
https://t.co/bxU0WGhBlp #LCA #CRX @fightblindness
A compelling roster of speakers and presentations at this year's VISIONS 2020 (Virtual) conference ... it starts Thursday, and registration is free!
Closing keynote speaker on Saturday is Bill Barkeley. Bill is one of 15,000 – 20,000 people in the United States and 100,000 people in the world with Usher’s Syndrome. Usher’s Syndrome is disease that robs people of both their hearing and vision over time. Bill lost 85% of his hearing from birth and in his late teens/early 20’s began to experience night blindness and vision loss. Usher’s Syndrome is progressive and there are no known treatments or cures.
www.fightingblindness.org/speakers#bill-barkeley-553
www.fightingblindness.org
The VISIONS Team is working hard to secure some of the world's best researchers and clinicians in the field of retinal diseases to speak at VISIONS2018.Virtual VISIONS 2020 starts Thursday - please sign up (it's free!). There are so many great workshops scheduled. On Friday, don't miss
Mental Health: Coping with Anxiety, Depression, and Stress Related to Vision Loss
Speaker – Ann Wagner, PhD, LP, ABPP
Moderator – Eric Ringham
People with vision loss often feel isolated, and may feel that isolation even more acutely with the social distance imposed by the COVID-19 pandemic. This presentation explores the unique dilemmas facing people with vision loss and those who serve as their helpers. It invites audience participation to discuss the critical need for support, to review education regarding emotions and what they tell us about our values, and to share some acceptance-based coping principles.
www.fightingblindness.org/schedule