Attention LCA Families: Sign up to receive the LCA Family Newsletter!
Sofia Sees Hope, a nonprofit focused on families living with Leber congenital amaurousis (LCA), will launch a quarterly newsletter in the fall of 2017.
SSH funds research for diagnosis, treatments and cures for rare retinal disease and provides advocacy and information for the LCA community.
The newsletter will be specifically for LCA patient families to help them connect with each other and with the resources and organizations that can help them. The newsletter will have both a print and a digital version.
“There used to a be a newsletter for LCA families and it was a wonderful resource and a great way to stay informed,” said Sofia Sees Hope co-founder Laura Manfre. “When I attend conferences and hear from families the number one thing other patient families say to me, is they miss the newsletter. I’m happy that Sofia Sees Hope is now in a position to do this.”
September 2017 launch
The newsletter will include LCA research news; contact information for research and trials, family stories, fundraisers, an event calendar, and a section dedicated to education on the patient and family role in advancing research.
Sofia Sees Hope has assembled a team of former journalists to spearhead the project, ensuring that the information it contains will be factual and trustworthy for patient families.
To sign up for the newsletter — and other information from Sofia Sees Hope — please visit this page:https://hopeinfocus.org/resources/newsletter/
You can also send article suggestions to Sofia Sees Hope by visiting https://hopeinfocus.org/contact/.NEWSLETTER SIGN UP