What do you do when you learn your child can’t see normally? It can be overwhelming to know your child isn’t making eye contact like they should and to learn they are or will go blind. It’s just as overwhelming to figure out what you can do about it.
We’ve broken it down into just three steps, and we’re working to make each step a little easier!
Connect for advice and support from the IRD community. Since you’re reading this, you’re already one step ahead! Check out other resources for good connections and please send us your questions, needs and ideas so we can continue to improve.
Register with organizations and companies that maintain patient registries.
My Retina Tracker, managed by the Foundation Fighting Blindness (FFB), is a main registry in the United States. Your doctor can help you with this step or you can do it yourself, and the FFB can help if you have questions. Registering puts you on the map with researchers and the scientific community, and the more families that register, the more attractive studying our disease is for new researchers.
Get tested to identify your gene, and update your registry!
Remember, these are rare diseases. Researchers need to be able to find the families with particular genes in order to learn more and test cures.
And if we may add one more step – in no particular order….
Treatments and cures don’t happen in isolation. The more involved we are as a patient community, the better we can…
- generate awareness for our disease
- attract researchers to study and continue finding cures for LCA and other IRDs
- influence policy benefitting rare disease research
- support each other!
Getting involved doesn’t have to be difficult. It can be as simple as reaching out to another family, participating in a Facebook group , supporting fundraising efforts, participating in a panel (we have them posted here!), attending a conference, signing up for our newsletter or sending us a story to include in our blog or newsletter.