Parent Support On Line 1
In the sometimes-isolating world of rare inherited retinal diseases (IRDs) such as Leber congenital amaurosis (LCA), another option exists to help bring people together – support by telephone.
The Lighthouse Guild of New York City offers a Parent Tele-Support Group in which parents of children with LCA across the country can come together every other week to share problems and solutions about parenting, genetic testing, education, socialization, accessibility and more.
The Lighthouse Guild is a not-for-profit vision and healthcare organization helping people who are blind or visually impaired gain their maximum level of independence.
For the past nine years, social worker Judith Millman, LCSW, has facilitated the LCA tele-support group
that usually convenes every other Wednesday evening, 8:45 p.m. EST. Nationwide, the group reaches people of all ages who may not have access to those having similar experiences.
She estimates about 50 families have been supported through the group over the years. Very occasionally, the sessions include a special guest.
Some years ago, Dr. Jean Bennett, part of the research team that created the breakthrough genetic treatment for LCA RPE65 called LUXTURNA™, took part in a call, back when her research was still in its clinical trial stages. Spark Therapeutics developed LUXTURNA™, which received approval in December from the Food and Drug Administration.
Other guests have included the inventor of a cane for toddlers, specialists in orientation mobility, and Betsy Brint, who is affiliated with the Foundation Fighting Blindness (FFB)* and the mother of a child with LCA.
Parents of children – from babies to teen-agers – participate in the sessions. The LCA telephone group is not gene-specific and includes people from across the LCA gene-mutation spectrum that includes an estimated 27 genes.
Even more so, the group is an avenue to inclusion, another resource for people to find comfort and a sense of belonging within the LCA community.