Category Archives: BLOG

A Year in Review: Our 3 Biggest Steps Toward the Cure

For us, 2016 has been a year of successes, propelling us forward into the New Year. We face many challenges every day, but because of your help and dedication to the cure, we were able to take so many important steps this year. Together, it has been proven that we can do many things, hold many events, and get that much closer to curing this retinal eye disease.  

We want to walk you through this year so each of you can see how far we’ve come with your help. Here’s our top 3!
shutterstock_134971778We partnered with The Mighty.

Just recently, we have joined hands with The Mighty to spread awareness about CRB1 degenerative retinal disease. The Mighty is a story-based health community whose focus is to inspire rather than inform. They publish real stories about real people who pass along their challenges and share courage, hope, and camaraderie. In partnering with this community, we are able to create a niche that tells those facing Retinitis Pigmentosa (RP), Lebers Congenital Amaurosis (LCA), or Cone-Rod Dystrophy that they are not alone in this. We will fight together.  

We Biked the Basin.

We were able to hold our 6th annual Bike the Basin fundraiser event, and we are proud to announce that this one was our biggest and best to date! Open to everyone, we had multiple options for all age brackets, including our #BIKEFORSIGHT team members from across the globe who were able to send photos, videos, and donations. Let me tell you, the most important part: we all had fun while doing it!  

We Made History on Capitol Hill.

In February last year, we made history. We were able to present for the introduction of a resolution (H.Resolution #625) that designates February 28th as National Rare Eye Disease Awareness Day. The resolution was presented in print as well as in Braille, making it the first of its kind in the history of the United States of America. We are still beside ourselves with gratification to be able to bring about this momentous step towards finding the cure.  

For 2017, we are working hard to make this year even better! It certainly is an obstacle, but we are sure all of us can handle it. We want to thank everyone for the progress we have made in 2016, and now turn to make 2017 the year we find the cure!  

Real People, Real Stories: We’re Partnering With The Mighty!

We’re thrilled to announce a new partnership that will bring our resources in front of The Mighty‘s wide-reaching readership. We will now have a growing home page on The Mighty and appear on many stories on the site. We are so excited to bring you this news, as The Mighty has touched so many people, bringing readers together from all over the country.

What is The Mighty?

The Mighty is a story-based health community that is focused on improving the lives of people who are facing disease, disorder, mental illness and disability, just as we are intent on finding a cure and resources for CRB1 degenerative retinal disease. More than half of Americans are facing serious health conditions or medical issues like blindness or visual impairment, and they want more than just information; they want to be inspired. The Mighty publishes real stories about real people facing real challenges.

Their stories are shared by those who may be facing the same circumstances as someone else or other families. By spreading their stories, others may garner courage, hope or camaraderie, allowing them to open up or become “mighty” in their fight against these ailments. “You’re not alone” and “you matter” are two maxims through which those living with disease can find strength that they express and share in stories.

We encourage you to submit a story to The Mighty and make your voice heard. By doing so, you can eliminate the stigma that may come with being diagnosed with a degenerative retinal disease. We want to hear from you to spread the hope.

What is Curing Retinal Blindness Foundation?

Curing Retinal Blindness Foundation is the only patient organization for CRB1 disease, our mission being to fund CRB1 research and find a cure as soon as possible. As one of many foundations for the blind, we strive to help the children with deteriorating vision before it is too late. We are working to stop the progression of the disease and ultimately restore all CRB1 vision with donations for the blind.

Because we’re dedicated to helping children and families living with blindness, our partnership with The Mighty will be able to help even more people. Learn more about our mission at http://www.crb1.org.