Time to Take the Hope in Focus LCA Community Survey
Responses Needed By July 29, 2022
Telling your story helps bring the Leber congenital amaurosis (LCA) community together. It also helps rare retinal disease advocates like us at Hope in Focus figure out how to better continue our mission of transforming the lives of those affected by blindness caused by LCA.
We’d like you to tell us your story in a different way – through a wide-ranging online survey – a way that will enable you to detail your experiences and create as storyline that, when combined with other voices, can help us tailor resources and support to the LCA community.
We opened the survey this spring and we’ve heard from people around the globe living with LCA or caring for someone with LCA.
We are now reopening it to reach as many people as possible, to gather as much information as we can, so we can better meet the needs of people living with one of the 27 identified forms of LCA.
Laura Manfre, Hope in Focus Co-Founder and Board Chair, said she is thrilled to bring you this survey, the first of its kind by the organization.
“We developed the survey to gather essential information about the experiences of people living with LCA to better understand their needs and help meet those needs,” Manfre said. “We all do better with more information, right?
“We are so excited to bring the LCA community together through this survey, knowing the results can only enhance our efforts to provide outreach, support, and education to those affected by LCA.”
We’ve compiled insightful information from people who already have completed the survey.
A preliminary survey result showed that more than 90 percent of the participants took part in genetic testing to learn about their gene mutation, what to do with the results, and to identify other associated symptoms or syndromes.
That’s a significant piece of information, as it underscores awareness of the importance of getting a confirmed genetic diagnosis, which, in turn, widens research paths to treatments and cures for various forms of the rare retinal disease.
Hope in Focus developed three objectives for the survey:
- To gain a better understanding of the needs of people living with and affected by LCA;
- To provide insight into the resources and educational support that are needed; and
- To understand how we can better support the community.
The survey covers a lot of ground and encompasses more than 50 questions. It should take about a half-hour – time that will help us glean information to help you well into the future.
It covers a range of topics, including disease education, genetic testing, patient registries, support groups, educational resources, and expenses.
We’re looking forward to translating the study results into action by, for instance, expanding our website to include critical, in-depth information about clinical trials, the research keys to finding LCA treatments and cures.
We already have one life-transforming changing gene therapy called LUXTURNA®, which has improved the vision of people who underwent the treatment for LCA2 caused by a mutation in the RPE65 gene. With more than 40 clinical trials at work, who knows when the next breakthrough treatment could come to market!
If you have already taken the survey, thank you so much! If not, it’s not too late for your voice to be part of this effort to better know the people in the LCA community and determine the best way to help them lead full, happy lives.
Just click here on the survey link and you’re on your way.
We look forward to receiving your answers by Friday, July 29. Thank you!