Author Archives: crb1

CRBF Work Is Featured During Rare Disease Week

Welcome to Rare Disease Week! This is a special week where rare disease advocates around the world work toward raising awareness and tackling issues surrounding rare diseases. CRBF will be in Washington, DC and at the National Institutes of Health in Bethesda, Maryland participating in the Rare Disease Day activities.



At the heart of the week is National Rare Eye Disease Awareness Day: Wednesday, February 28th.  Follow along with us here and on our Facebook, Twitter, and LinkedIn pages as we bring you the awareness activities CRBF is involved in to further our great work.  SPOILER ALERT: Rare Eye Disease AND CRBF will be featured on the biggest Rare Disease Day stage this week!  We’ll post more on that this week!


First up for this week:

CRBF President Kristin Smedley is featured in the prestigious Rare Daily, an online publication of Global Genes. Global Genes®  is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon®. What began as a grassroots movement in 2009 , with just a few rare disease parent advocates and foundations , has since grown to over 500 global organizations.   Click to read Kristin’s interview with Rare Daily.


Stay tuned for more on Rare Disease Week and National Rare Eye Disease Awareness Day!


Our Achievements and the Up and Coming

We have come so far and achieved so much, but what we are so very proud of is our brand new partnership with Inspire! Inspire is the leading social network for health, which connects patients and caregivers in a safe permission-based manner. Curing Retinal Blindness Foundation is now the retinal blindness community connection on Inspire’s platform! With one one leader per health arena, this is a big achievement for us. We are the go-to for retinal blindness, reaching out to any who are in need.

“Together we are better”

By having connections across the world 24 hours a day, seven days a week, members are able to obtain resources and the support they need regardless of location, background, or status. Feelings of isolation are extinguished, and this patient-centric platform is able to welcome you with experience.


Mutated CRB1 in human induced pluripotent stem cell derived retinal organoidsEberhard Karls University TuebingenInstitute of NeuroanatomyStefan Liebau & Marius UeffingEstablishing 3-DimensioAround the Corner

Curing Retinal Blindness Foundation isn’t stopping there, we are catapulting forward towards even more fundraisers, events, and partnerships! We want you to join us. Don’t hesitate and contact us today or sign up right now.

  • Cocktails for the Cure
    March 31, 2017 – As the name suggests, this annual event allows guests to indulge in cocktails to achieve a cure for CRB1 retinal disease. With speakers, dancing, live music, and much more, this event is surely one you won’t want to miss. Cocktails for the Cure will be happening at Spring Mill Manor with VIP Hour (special ticket/event sponsorship required) from 6:30-7:30PM and the Main event from 7:30-11PM.
  • TED event: Stanford MEDx-ED
    April 21, 2017 – Kristin Smedley is presenting yet another wonderful TED event, representing rare eye diseases on a rare disease panel.
  • Million Dollar Bike Ride for Rare Diseases
    Funded through our partnership with Penn Medicine, all proceeds of this event go towards life saving rare disease research.

At Curing Retinal Blindness Foundation, we are going to stop at nothing in finding treatments or a cure for retinal blindness. With your help and support, we have come this far, but we are going farther, and we want you with us. Contact us today, donate, add our events to your schedule, and go forward with us!  


Perceptions of Blindness: TEDxLincolnSquare Event in New York City

On March 28th, award-winning nonprofit leader, rare eye disease advocate, up and coming author, and mother, Kristin Smedley, will be speaking in New York City at a TEDxLincolnSquare Event. Her focus will be on perceptions of blindness and “How I Learned to See Through the Eyes of My Sons”. It will be both live-streamed from and shared at the intimate and charming Triad Theater, along with other live speakers, two recorded TED Talks, and live music performances. This is not an event you want to miss! See details below.

TEDxLincolnSquare: Risk Takers and Change Makers
March 28th 10AM-4PM
Triad Theater: 158 West 72nd Street, NYC, NY 10023   

Kristin Smedley, co-founder and president of Curing Retinal Blindness Foundation, will be exploring what many others face in today’s society. How do we perceive blindness today–where do our expectations lie? From her standpoint, we need to raise the bar; we need to start believing in vitality.  

A mother of three, two of her children were diagnosed as blind. She toiled through crushed expectations, thinking that everything she had hoped for her two sons was now for naught because they were blind. But as she went on, she derived hope that shifted her expectations of what might still be possible. Erik Weihenmeyer climbed Mount Everest without sight, why couldn’t her sons go on to achieve great heights as well?

What it came down to was perception. The blind have lower expectations, but that doesn’t mean that’s all they are capable of. Through their journey, Kristin’s boys were able to advance in a world that is visually-inclined, defeating the stigma of low expectation that surrounds them. They face their challenge equally, sighted or unsighted, in order to achieve their dreams and pursue their passions.  


Thriving Blind: The Book  

On the same topic as her TEDxLincolnSquare talk, Kristin Smedley’s new book is also scheduled to be available for pre-order on the same day. “Thriving Blind” explores the concept that those with sight have no idea what the blind are capable of, leading to a life of dependence, underachievement, and low expectations. Her book serves as a lesson and as an inspiration, telling stories about the journeys that some have gone through to get to where they are.


Please tune in to the TEDx event as we raise awareness for CRB1 retinal disease alongside of Curing Retinal Blindness Foundation!


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