• About
    • Our Story
    • Our Vision/Mission
    • Our Team
    • Pressroom
  • For Families
    • What is LCA?
    • ID Your Gene
    • Clinical Trials
    • Resources
    • Rare Retinal Disease Glossary
    • Family Connections
    • Sofia Sees Hope Ambassadors
    • Let’s Chat About…
  • Stories
    • Posts & Videos
    • Photo Gallery
  • Get Involved
    • Dinner in the Dark
    • LCA Family Conference
    • Event Calendar
    • Donate
  • Contact
    • Get in Touch
    • Newsletter Sign Up
    • Family Connections
  • DONATE
    Leber Congenital Amaurosis Leber Congenital Amaurosis Leber Congenital Amaurosis Leber Congenital Amaurosis
    • About
      • Our Story
      • Our Vision/Mission
      • Our Team
      • Pressroom
    • For Families
      • What is LCA?
      • ID Your Gene
      • Clinical Trials
      • Resources
      • Rare Retinal Disease Glossary
      • Family Connections
      • Sofia Sees Hope Ambassadors
      • Let’s Chat About…
    • Stories
      • Posts & Videos
      • Photo Gallery
    • Get Involved
      • Dinner in the Dark
      • LCA Family Conference
      • Event Calendar
      • Donate
    • Contact
      • Get in Touch
      • Newsletter Sign Up
      • Family Connections
    • DONATE

    Family Stories

    0
    By Rosanne Smyle
    In Blog
    Posted February 25, 2021

    Which States Have Rare Disease Advisory Councils?

    15 states with an established Rare Disease Advisory Council: Alabama, Kentucky, Illinois, Massachusetts, Minnesota, Missouri, Nevada, New Hampshire, New York, North Carolina, Ohio, Pennsylvania, [...]

    READ MORE
    0
    By Rosanne Smyle
    In Blog
    Posted February 25, 2021

    Working to Create Rare Disease Advisory Councils in all 50 States

    Fifteen states done, 35 to go. Fifteen states have established a Rare Disease Advisory Council (RDAC) to give the rare disease community, including those living with Leber congenital amaurosis [...]

    READ MORE
    0
    By Rosanne Smyle
    In Blog
    Posted February 2, 2021

    ‘Let’s Chat About …’ Webinar Offers LCA Overview and Updates on Clinical Trials

    In the debut of Sofia Sees Hope’s ‘Let’s Chat About …’ monthly webinar series, Ben Shaberman of the Foundation Fighting Blindness, provided his Zoom audience with a plethora of information [...]

    READ MORE
     ProQR Completes Enrollment for Next Phase of RNA Therapy for LCA10-CEP290
    0
    By Rosanne Smyle
    In Blog
    Posted January 29, 2021

    ProQR Completes Enrollment for Next Phase of RNA Therapy for LCA10-CEP290

    ProQR Therapeutics reached an important milestone by completing enrollment in the next pivotal phase of clinical trials of sepofarsen, a developing RNA therapy for treating LCA10, a form of Leber [...]

    READ MORE
    0
    By Rosanne Smyle
    In Blog
    Posted December 7, 2020

    Michael Kalberer’s Philosophy: Transcend Disability

    Born with cerebral palsy (CP), Michael J. Kalberer grew up with a philosophy that has served him well throughout his 43 years. “My parents raised me as an individual with a disability, not a [...]

    READ MORE
     Reflecting on the Trajectory of IRD Research
    0
    By Sofia Sees Hope
    In Blog
    Posted December 1, 2020

    Reflecting on the Trajectory of IRD Research

    By Ben Shaberman Senior Director, Scientific Outreach & Community Engagement Foundation Fighting Blindness When I joined the Foundation Fighting Blindness as a science writer in 2004, I [...]

    READ MORE
     Hope is Believing the Future Can Be Better
    0
    By Sofia Sees Hope
    In Blog
    Posted November 24, 2020

    Hope is Believing the Future Can Be Better

    By Jack McCormick I must admit, when I learned that my vision was slowly deteriorating, I lost hope. I didn’t know what the future would bring. I knew that with worse vision came more [...]

    READ MORE
    0
    By Rosanne Smyle
    In Blog
    Posted September 3, 2020

    Making Connections in the LCA Community Provides a Path Forward

    Danielle Senick of Norwich, Conn., reached out to Sofia Sees Hope more than three years ago when she needed answers about her deteriorating vision. Doctors diagnosed Danielle at age 6 months with [...]

    READ MORE
    0
    By Rosanne Smyle
    In Blog
    Posted August 18, 2020

    Using Their Fingers, Blind Children Learn Music and Languages with Lux+Louise

    Building on her son’s love of music, singing, moving, and reading, Laura Steinbusch created a multilingual children’s songbook called Lux+Louise to help youngsters learn music by braille. With [...]

    READ MORE
    0
    By Sofia Sees Hope
    In Blog
    Posted July 23, 2020

    Life in the Time of Coronavirus

    By Jack McCormick I first heard about coronavirus on my way back from a weekend of skiing in mid-January. It seemed to be the only thing the radio station we were listening to was talking about. [...]

    READ MORE
    1 2 3 4 5 6 7 8 9 ...
    page 1 of 11

    Sign Up for Our Newsletter
    NEWSLETTER SIGN UP
    Get In Touch
    • 860.556.3119
    • info@sofiaseeshope.org
    Follow Us
    Sofia Sees Hope is a 501(C)(3). © All rights reserved.
    Please read our Privacy Promise.