Author Archives: kristin

RARE BLAB 02: Social Media 4 Rare Disease Missions

RARE BLAB is hosted by Kristin Smedley, President and Co-Founder of the Curing Retinal Blindness Foundation.  Rare Blab is broadcast on the platform with a goal of connecting rare disease mission leaders to resources to further rare missions!  If there is a topic you’d like to see covered on RARE BLAB or if you are interested in being a guest, please send an email to  Connect with Kristin on Twitter @KristinSmedley


rare blab header

The second episode of RARE BLAB was a great social conversation about using social media to expand rare disease missions! Kristin was honored to chat with

Stephanie Fischer, @RarePOV, Every Life Foundation and 

Emma Rooney, @BlumenCasey, My Normal (Storytelling for Rare Diseases)




WATCH and scroll down for links and notes mentioned in the Blab!


The Basics: Slides from Stephanie’s breakout session on social media at Rare Disease Week on Capitol Hill can be found at

Hashtags Tweetchats/Conferences: Symplur Healthcare Hashtag Project lists tweetchats and conferences. You can easily register a new hashtag here, too. It is free to join.

Storify:  enables you to tell a story with tweets from a tweetchat, conference or hearing, or based on a hashtag. It is free to join.

Rare Disease Advocate to Follow on Twitter@SavingCase – an advocate witht he incredible  #ProjectAlive #WhenIGrowUp campaign with video

Twitter Tips: #TwitterSmarter Tweet Chat and podcast with Madalyn Sklar – Madalyn is a top Twitter influencer and this tweet chat is huge.  Tons of Twitter tips every week, Thursdays 1pm Eastern on Twitter (mentioned at the 32:15 mark)


Global Genes toolkits for rare disease:

How to Promote Your Rare Disease Story through Social Media:

Storytelling for your rare disease

Global Genes Rare Disease Patient Summit: September 22-23 Huntington Beach, CA


Video Storytelling: Kristin’s new Facebook community Thriving Blind uses lots of video to share tips and resources for living with the rare disease her boys have, CRB1 degenerative retinal disease

Facebook Live: A new feature from Facebook that gives people a huge reach.  This is a great post about doing your first Facebook live broadcast from a top influencer, Kim Garst.  It is geared toward reaching/gaining “customers”, so think of your rare patients, supporters, etc as your “customer” audience.

Rare Disease Mission Pages: Follow these rare disease mission Facebook pages on to see how they utilize Facebook to spread awareness. Curing Retinal Blindness Foundation   Every Life Foundation for Rare Diseases


Social Media Influencers in Rare Disease: The World Orphan Drug Congress released a list of top social media influencers in rare disease in 2013 and updated it last year.

– Original:

– Update:

RARE BLAB 01: FUNdraising! Team Jake’s Day at the Ballpark

RARE BLAB is hosted by Kristin Smedley, President and Co-Founder of the Curing Retinal Blindness Foundation.  Rare Blab is broadcast on the platform with a goal of connecting rare disease mission leaders to resources to further rare missions!  If there is a topic you’d like to see covered on RARE BLAB or if you are interested in being a guest, please send an email to


Copy of “For once you have tasted flight you will walk the earth with your eyes turned skywards, for there you have been and there you will long to return.”The first ever episode of RARE BLAB was a great conversation about a wonderful fundraising/awareness event where the Curing Retinal Blindness Foundation was able to team up with the  Wichita State Women’s Softball Team! Kristin was honored to chat with

Lisa Billingley, @TeamJakeKC, Curing Retinal Blindness Foundation and

Kristi Bredbenner, @CoachBredbenner, Head Coach Wichita State University Softball


Blindness Awareness Blab: Toys Books & Games for the Blind and Visually Impaired

Kristin Smedley, President of CRBF, hosted her first ever @Blab with fantastic, resourceful influencers in the blind/vi community!  Joining Kristin are

Amber Bobnar of Wonderbaby @wonderbaby

Hilary Kleck of Sensory Sun  @sensorysun

Karen Newell of ToyLIkeMe  @ToyLikeMe

Watch the discussion of great toys, books and games for blind and visually impaired children!


Taking the wheel to steer through our one big obstacle…

15 years ago I became a mom.

15 years ago I held a perfectly healthy baby boy.  I noticed how strong he was: “He’ll be a great athlete”, I thought.  I noticed how engaging he was: “He’ll have lots of friends” I thought.  The plans and dreams were pouring through my mind as I wondered what amazing things lie ahead for this miracle, this perfect little present to the world… and then I was told he was blind.


I was told, in one very quick conversation with the specialist, that he wouldn’t do the things I dreamed about.  I was told he wouldn’t play baseball.  I was told he’d never drive.


Fast forward 15 years and that horrific moment in the very cramped exam room is so incredibly distant from my reality with my son today.  My son has done more in 15 years than I ever thought a child, blind or sighted, could do.  He is an honor student at a “regular” public school.  He gets voted to Student Council annually.  He is in a rock band.  He has won awards and is even featured in a book for his musical passion.  He did play baseball… and football, and wrestling, and competitive swimming and diving, and now he is on the track team.  He has blown every false notion and every supposed limit of blind people out of the water… he literally has changed what it means to be blind.


But there is this one thing nagging at him that is, no pun intended, driving him a bit nuts: he can’t drive.  He is 15, and for those that have or had a 15 year old, the learner’s permit and driving lessons seem to consume their every thought.  “When can we go out and practice driving” a 15 year old nags.  “You’ll pay my insurance, right?” a 15 year old pleads.  “When can I get my own car?” a 15 year old negotiates.


Although none of this takes place in my house, I know it happens everywhere else as I see it all play out on Facebook.  Because I have a 15 year old I happen to know lots of moms with 15 year olds… so my news feed is constantly streaming with pictures of proud teens sitting behind the wheel for the first lesson, and then, a few months later, smiling ear to ear with the coveted little laminated card: the driver’s license.


We aren’t ones to dwell on the negative ‘round my house, we are a family of positive thinking (usually!) and action.  Watch this:

In my house, instead of asking if he can practice driving, my son asks about gene mutations.  Instead of comparing features of cars, we compare progress and hurdles with gene therapy and stem cell transplants.  While others discuss costs of insurance and car payments, we discuss fundraising totals and clinical trial expenses.  Although it seems a dreary story that my son can’t get behind the wheel, it actually is a story of hope, of action, and of opportunity just around the corner.


Will you share our story and help us #DriveTheResearch to get my son, his brother, and the other estimated 80,000 affected people to the finish line?  I’d so appreciate it.  And next time you have an argument with your teen about driving issues, be grateful.


The Eye Believe in Miracles BLOG is written by Kristin Smedley, mom of two sons living with blindness, and President of the Curing Retinal Blindness Foundation.  If you would like Kristin to speak to your company or organization about moving out of fear, past challenges, Out of Darkness and Into Greatness, send her an email at   If you would like to Join The Mission to help fund cures for retinal diseases please DONATE here.    Together we can do so much.

My journey out of darkness… summed up in 11 hashtags

My teenager tells me I use too many hashtags in my social media posts. He’s right.  I totally #OverHashtag.  I love ’em… because everyone that knows me knows I have issues being brief… and hashtags help me sum up my thoughts, sort of.  Feel free to read only the hashtags to figure out the milestone moments in my journey thus far… or go for the gusto and read the whole thing for a bit more detail.  Regardless, I hope this snippet of my personal journey helps if you are trying to move out of your darkness… and into greatness. 

#EyeBelieveInMiracles  I believe in them… miracles, that is.  How else can I explain that I have thrived despite the challenges in my path, that I have surrendered my control and my need for my plan… and my ultimate shift from pessimistic victim to optimistic thriver?  I used to think miracles came in “Hollywood” style… bright lights… beautiful music… attention grabbing scenarios.  Interestingly enough, my miracles are quiet, small: a shift in perspective, a friend calling just when I am about to sulk, a connection to someone that can help me on my journey. Coincidences? Maybe… but I doubt it.  There is an ultimate Plan at work here… and the fact that I am still laughing every day is proof enough that sometimes it takes a miracle (or two or more) to move out of darkness, and into greatness…

#BSElementaryEd  I have four brothers.  I like to say I was “second in birth order, first in command”. (cue the eye rolling from all of my brothers) As far back as I can remember I loved playing teacher to my younger brothers.  I would sit them in little chairs in the back room of our basement where my Dad had mounted a green chalkboard to the wall.  I would hold “class” and give them “homework”.  I loved to write on the board.  I loved when they actually sat and raised their hands and gave answers I was looking for.  I loved teaching them school skills, piano skills, even sports skills.  It was no surprise to anyone that I chose teaching as my profession.  I loved it.  I was good at it.  I had no idea just how necessary the teaching foundation would be in my journey, how much those skills are all part of the Plan…

#Mom  After starting my career and getting married, my husband and I had the “luxury” of planning exactly when we wanted to have a baby.  At 28, I got pregnant with no issues and was every bit the happiest pregnant woman around.  I wore cute maternity clothes, chatted with my co-workers and friends about baby names, and my husband and I discussed all the sports and academic success our baby would have.  I followed every chapter of What to Expect When You’re Expecting.  I played all the classical music, just as the books said.  I talked to and sang to our unborn child, just as the books said.   All was perfect… and I woke perfectly calm one night when my water broke in perfectly calm fashion… and my perfect little first born arrived perfectly safe. My life was perfect…

#Darkness  Everyone told my husband and I how lucky we were.  Our baby was the perfectly healthy, beautiful, easy going, cuddle loving boy of our dreams.  He was the perfect size and the perfect temperament.  He loved being held when we wanted to hold him and he loved lying in his crib/pack-n-play/bassinet/swing/bouncy chair when we needed our hands free.  Until… one day I noticed when I laid him down on his back, his eyes would swirl around and eventually disappear far down in his eye sockets… like he was trying to see way past his nose. After rounds of tests during a weekend “stay” in the hospital, we got the diagnosis we had never ever planned for and no book was on the new mom shelf to prepare us for: The doctors told us our baby was blind.  “Will he ever drive a car?” we asked.  “No” the doctor said.  “Will he ever play baseball?” “I’m sorry, no” he said.  The doctor gave us only this: “He will be a Braille reader and he will walk with a white cane.  Good luck.” When I caught my breath, I immediately started to pray for a miracle…

#Anger  I had it all planned.  I think from the moment I met my baby boy I started running in my head colorful, detailed visions of him riding his bike with all the neighbors on bright sunny days, running down the football field beating the defense and scoring the touchdown, swinging for the fences and getting the game winning home run.

It’s an interesting thing when you are hit with one of life’s curve balls. I wish I could say I was ever so graceful and trusting there was a great new Plan for my life with my son… but I wasn’t any of that.  I was mad.  I was really mad.  What about my plans?  What about my son’s destiny to be “one of the great ones” at all the things he would do?  And so began the biggest, longest tantrum of my life… longer than I will ever care to admit…

#Surrender  My son grew into a happy toddler that happened to be blind.  While I prayed for a miracle that his vision would improve, his vision worsened.  After three years of being fully consumed with raising a blind child, my husband and I made the decision to go for baby #2.  We knew our son’s genetic condition has a one in four chance, with every pregnancy, of having another affected child. The genetics counselor warned us. The doctors warned us. After considering all the information, we decided to move forward with having a sibling for our son and growing our family.  I will never forget a moment, right around Easter, when I was having one of my “conversations” with The Man Upstairs.  Okay it was more like a one way dissertation that involved me telling Him how this was going to play out: “I am not going through another diagnosis, period” was my statement.  And then on and on I went with my ultimatums list… me telling Him how the Plan was gonna work…. that is… right up until my 3 year old, my most happiest kid on the planet 3 year old, my sing a song at every second and smile all day long 3 year old, came bouncing/skipping into my room and with a big smile said “Mommy are you in here?”  “Yes.” I said as I wiped my eyes.  “Isn’t this just the best day ever?” he asked.  “Is it?” I asked him.  “Oh yes” he said, “it is just amazing and I am just so happy”.  And with that he skipped on out of the room, literally happy as can be.  And there it was, the moment of proof, a moment I now see as one of many miracles: my son did not see his blindness as sadness, so why did I?  He saw nothing but joy and love in front of him, so why wouldn’t I?

I am not sure if you have ever had a moment of surrender… but this was mine.  I changed my “speech” from that of whining to one of “Ok fine.  If indeed I was meant to raise two blind kids, than You better send me all the tools I need to do it, and to do it well.”  Geez… even in surrendering I was being demanding….

#Transformation  My second child arrived into the world early, and so incredibly active that he astounded the doctors and nurses… and has never stopped making himself known to absolutely everyone in a room ever since.  And yes, he is blind too: same condition as my first son. Although it is never easy to hear that one, let alone two, of your children are anything less than perfectly healthy, I will say that thanks to the whole surrendering night, this second diagnosis was much more bearable than the first… and honestly, this time I had my first little guy and his big beautiful smile to help me realize that although challenging, this was going to be a journey I could handle.  Once my thoughts and my attitude transformed to the positive, I became so much more productive…

#PathToGreatness  I held The Man Upstairs to my “suggestion” that He better send me all the tools I needed to raise these boys, and raise them well.  I was not looking to just “survive” raising two kids with challenges… I wanted to raise them as I would any other child: to be the very best at whatever it is they wanted to do!  That meant I had to learn Braille so they could learn Braille.  I had to find out about canes and safe travel so they could learn the techniques.  I had to find out what blind people do for a living, what they do in their free time, how they access tv and computers and games and phones and…. the list was endless.  But little by little, resource by resource, I filled my “toolbox” with tools that my guys would need.  At the same time, our family built our team that we needed to advise us medically, educationally, etc.  We flew around the country to see the best doctors to get a true understanding of the rare disease our boys have and what to expect.  We consulted early intervention and education experts to make a plan for the boys’ education path.  I read books about successful blind adults and we sought opportunities to get our boys up close, literally, to blind role models so they would know the sky is the limit for them.  We were learning everyday how to help our boys’ begin their own paths to greatness…

#Appreciation  As luck would have it, my third child came into our lives earlier than most expected, but just in time to make our family complete.  My daughter was born just thirteen months after my second son (I will pause for all the gasps and OMG’s) and while it has been complete mayhem with kids so close together, we are so very lucky to have her incredibly positive and funny personality with us.  My daughter is fully sighted – so much so that to this day (she is 10) I sometimes still stare in amazement at just how much she can see!  Ever since I gave birth to two children with no sight, I so greatly appreciate the gift of sight, especially in a child…

#cureCRB1  While my husband and I are raising our children, blind and sighted,  to know they are perfect in every way and that nothing about them needs to be “fixed” per se, a door to cure our boys’ blindness opened for us in 2011, and we have been working to cure CRB1 disease ever since.  The biggest, most successful fundraising effort we have created so far, actually our children created,  is our Bike the Basin event, a youth cycling movement that involves thousands of people, mostly kids.  It is interesting:  while I am not actually in a school classroom in front of 25 kids as I was trained to be and hoped my whole young life to be, I am instead working with hundreds of kids all year long to pull off one of the biggest youth events in town.  Also, in running a worldwide foundation that addresses blindness, with most of the patients being children, I talk with people every day about the milestones their blind children are hitting, about reading levels they are at, about education plans, teaching strategies, etc. Funny how the training life brings your way ends up being for a purpose way different than expected…

#MyPurposeDrivenLife  When I first read The Purpose Driven Life (Rick Warren) I loved it, but honestly I expected my purpose to either be written in the final pages or to come to me in the middle of the night.  I swear I got to the end of the book and was like “okey dokey… I will sit here and wait for a phone call or a trumpet guy to hand me my purpose!”  Um, that so did not happen!  But what did happen was a shift in my way of looking at my path and at my challenges that came into my path.  I wasn’t quite sure for years what my purpose was – I thought for a while that it was to raise three children and help them overcome their challenges.  But that just wasn’t sitting right for me.  I mean, I knew I was meant to be the Mom of these three kids… but my purpose had to be more about me as a person, in addition to me as a mom.  It took a while to realize.  It took a few years of moving forward, with my eyes wide open, ears wide open… and it came… .  What I know my purpose to be now is to share my journey of shift in perspective, of optimism over pessimism, of tool box building instead of excuse gathering, and team building instead of lonely sulking. My purpose is to take others by the hand, albeit physically or metaphorically, one at a time or groups at a time, out of their own personal or collective darkness…. and inspire them to create their own path to their greatness.  We all have greatness waiting… we just need to face our darkness, create our plan, gather our tools, and recruit a team to help us…  Contact me if you need me on your team.

The Eye Believe in Miracles BLOG is written by Kristin Smedley, mom of two sons living with blindness, and President of the Curing Retinal Blindness Foundation.  If you would like Kristin to speak to your company or organization about moving out of fear, past challenges, Out of Darkness and Into Greatness, send her an email at   If you would like to Join The Mission to help fund cures for retinal diseases please DONATE here.    Together we can do so much.