HOPE… it’s in our team.

WELCOME to a special blog post from CRBF President and Co-Founder, Kristin Smedley!

Want to know what HOPE looks like?

Hotel Irvine, home of the 2017 Global Genes Patient Summit

Imagine a hotel campus in sunny California where those affected by rare diseases have converged to share, inspire, enlighten and most of all, drive progress.  Lots and lots of progress to solve lots and lots of medical mysteries.  Here, there is more evidence of HOPE in one day than the entire Christmas season boasts.  With every slide deck, speaker’s story, and tweet quoting a presenter, HOPE fills the massive ballrooms and bursts through the doors of breakout rooms. HOPE fills the minds of scientists looking to create treatments for rare patients.  HOPE fills the hearts of funders  looking to help.  Most of all, HOPE fills every nook and cranny of the mind, body, and soul of a Rare Mom like me.

 

A Rare Mom. A Mom of children with a rare disease.  That’s me.  That’s lots of people here. There’s Rare Dads and Rare Grandmas and Grandpas here.  There are Rare patients and siblings here too.  We have all been given a diagnosis of a rare disease.  Some “lucky” ones have met or heard about other people in the world affected by their disease.  Some are the only ones known on the entire planet to be affected. And for just about every single Rare person here, there is no treatment, no cure, no answer for their rare disease.

 

But HOPE is abundant here, and so the journey for many Rare families is changing… for the better.

 

I’m at the Global Genes Rare Patient Summit.  I have been attending this conference for a few years and was so impressively overwhelmed with all the knowledge here that last year I started recruiting members of my Board of Directors to attend with me.  Our non profit, the Curing Retinal Blindness Foundation, is the  only patient organization in the world for our rare eye disease, CRB1 LCA-RP.  That’s not a very big deal here because, after all, most of the organizations represented here are the only of their kind around the globe.

 

CRBF team members at the Global Genes 2017 Patient Summit

Three of my team members joined me here last year – and we were so energized afterward, and our organization grew on so many levels, that this year there are eight members of our team here.  Eight people for a two day conference – the information is that abundant and more importantly, that valuable.

 

The theme of the Global Genes organization is “Hope, It’s n My Genes.” The conference attendees wear jeans to promote the “genes” theme. (Side note: I’d be interested to someday have someone count how many times the word “gene” is spoken here!) I don’t know if it’s the casual nature that jeans summon, or if it’s the beautiful California weather that inspires, but here, folks are cooperative not competitive.  They share instead of block information.  They listen.  They teach.  And they hug… my God is there a lot of hugging here! OK so I admit I’m one of the huggers, I just can’t help myself! I mean, when you meet a scientist that is dedicating his/her life to figuring out a rare disease, a disease they have no relation to,  can you really just shake their hand?  Or if you meet a Mom raising a rare kiddo just like you are and they get it… they really, really get it… is a high five gonna do that justice? As I attend each year I am hugging people I actually know moreso than complete strangers.  It’s not that I am holding back on giving someone I don’t know a big ol’ thank you bear hug, it’s just that many of the folks I have met here have become my friends. Close friends that know my journey, my hopes, my successes  and my epic fails.  And I know theirs.

 

And what happens when so much information is shared and so many relationships created?  Some might go into overwhelm and lose focus.  My team, however, spends a day locked up in a room to review every session note, every slide, every bit of information, every business card.  We compile all the notes and create our focus plan for the next year.  If you have followed our progress since we have been involved with the summit, you’ll understand just how much of an impact it has on our work.

 

I know how Rare it is to have two children affected by a rare eye disease.  I know how Rare it is  to have found hundreds of people that can help my work for this disease.  Above all, I know how very blessed I am to have the team that I have by my side, walking this journey from darkness to light, together.  Here at the Global Genes Patient Summit, teams like mine are not Rare… they are plenty.  And they, like my team, are moving mountains for rare diseases.

 

Kristin Smedley is President and Co-Founder of CRBF. She is also an author and TEDx speaker.  She originally planned to be a third grade teacher… and then two of her three children were diagnosed as blind.  In addition to growing the CRBF to reach patients and scientists around the globe, Kristin also shares her journey of raising her kids to not just survive challenges, but to thrive!  She speaks about blindness and resilience, and she just launched her new series teaching people to SEE: Set Extraordinary Expectations!  Watch her TEDx talk here and get info regarding her new book here.  If you are interested to have Kristin speak at your upcoming event, email her at curingretinalblindness@gmail.com or contact her here!

 

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 http://www.crb1.org.

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