CRB Foundation

Cure Retinal Blindness FoundationDONATE for a Cure:  www.crb1.org

Family outdoors

            Brandon is 26 years old with LCA-CRB1, a form or Leber’s Congenital Amaurosis, and his brother, Joshua, is 22. Josh is a potential carrier of LCA-CRB1; however, he has no visual difficulties related to the gene mutation. Josh has his B.S. in Computer Science and Game Design with a minor in art from DigiPen Institute of Technology. He also enjoys science and math and has a brilliant mind. Brandon is working on his M.A. in Inclusive Design from OCAD Univeristy in Toronto, Canada. He is also an inspirational performer with a B.A. in Music. He loves acting, singing, dancing and has performed in over 19 musical theater productions and two opera productions. He is also a songwriter and has delved into putting together clips of his songs. However, his greatest passion is opera. His beautiful bass/baritone voice enchants us as we listen to him perform with a richness that comes from his heart. Brandon has not let his lack of sight keep him from following his dreams.
            We have been following the clinical trials for the RPE65 gene and have been excited about the success in restoring sight that has come from those trials. As we thought about it; we said, “Why not CRB1? Let’s start a foundation for research into the CRB1 gene!” I asked another mom, Jennifer Pletcher, who was doing this for her daughter’s gene mutation and she put me in touch with Kristin Schneider Smedley. Kristin has two boys with LCA-CRB1 blindness. I asked Kristin if she would partner with me and she said, “Yes!” The more we got into our dream, the more families we have connected with and Kristin has been able to really get things moving because she lives in Pennsylvania where the doctors are.  Thus the CRBF (Curing Retinal Blindness Foundation) has been born. We have since become our own 501 (c)3 so donations can be made directly to CRBF.  Connecting with Kristin and other families affected by LCA-CRB1 has been a Godsend for us! We have been waiting and desiring this opportunity for 26 years and a cure will now become a reality with your help in funding research on the CRB1 gene! You can help by directly donating or hosting fundraisers in your area and donating the proceeds to http://www.crb1.org. When the website asks which family you represent, choose the Biggs Family. Together, the families in CRBF have raised over $1,000,000+ that is put to work to support the research that will find a cure for our children’s blindness.
            What will this do for our family? Brandon will be able to have his sight restored! He will be able to see the dance moves, read print music, read the cold read scripts, and see the beautiful face of his gorgeous wife! He will also be able to see our faces…the face of his mother, father, and brother for the first time. We are proud of Brandon’s accomplishments as a blind programmer and performer, as well as his top academic grades at his university. He has done so much with his life already. Our dream for Brandon is that he will be able to see with his eyes one day soon. Both of our boys make us proud parents and Brandon always reminds us to “Dream the impossible dream…and then live it!” –Atom & Sonja Biggs with Joshua and Brandon

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