Author Archives: kristin

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!

 

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 Blab.im 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 curingretinalblindness@gmail.com  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   sfischer@everylifefoundation.org and 

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

 

 


 

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

Twitter:

The Basics: Slides from Stephanie’s breakout session on social media at Rare Disease Week on Capitol Hill can be found at https://t.co/gWg195eLYl.

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. http://www.symplur.com/healthcare-hashtags/

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. https://storify.com/

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 http://www.madalynsklar.com/twittersmarterchat/ (mentioned at the 32:15 mark)


 

Global Genes toolkits for rare disease:

How to Promote Your Rare Disease Story through Social Media: https://globalgenes.org/toolkits/

Storytelling for your rare diseasehttps://globalgenes.org/toolkits/storytelling-2/why/

Global Genes Rare Disease Patient Summit: September 22-23 Huntington Beach, CA http://www.cvent.com/events/2016-rare-patient-advocacy-summit/event-summary-105d2cdeb479495fbafc73cc0ad4f47f.aspx


Facebook

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: http://www.terrapinn.com/template/Live/documents/7057/16197?#sthash.w95Xzns7.dpbs

– Update: http://www.orphan-drugs.org/2015/01/29/social-media-rare-disease-community/

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 Blab.im 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 curingretinalblindness@gmail.com

 


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 www.wonderbaby.org

Hilary Kleck of Sensory Sun  @sensorysun www.sensorysun.org

Karen Newell of ToyLIkeMe  @ToyLikeMe   www.toylikeme.org

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 curingretinalblindness@gmail.com.   If you would like to Join The Mission to help fund cures for retinal diseases please DONATE here.    Together we can do so much.