Monthly Archives: July 2016

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!

 

CRB is Biking The Basin in Bucks To Battle Blindness

 

The Curing Retinal Blindness Foundation is excited to announce some new details regarding our 6th Annual “Bike The Basin” Fundraiser. This is set to be our BIGGEST and BEST one to date!

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Ladies and gentlemen, start your engines! Well… not quite.
Ladies and gentlemen, prepare to pedal! There we go. Much better!

On September 18th, tykes with bikes from across Bucks County will be converging at the Northampton Civic Center in Richboro, PA, to join the movement (literally) at our “Bike The Basin” benefit with one goal in mind; to raise money to help cure retinal blindness in children.

Step 1:  REGISTER:
Free – WARM UP WALK
$20.00 – Single Bike Ride Participants
$150.00 – Family/Team of 10 Bike Riders
$225.00 – Family/Team of 15 Bike Riders

The event it open to any and everybody. There are a bunch of options that appeal to audiences of all age brackets. The (FREE) Warm Up Walk is about a mile long and is open to adults and children of all ages. The Bike The Basin course is designed for children 1-14 years of age and is a half mile track at the Basin. The 14-18 age group will have the option to “Trek The Tyler”, which is a ~3K bike ride through a guided trail with adult cyclist supervision (approximately 3 miles).

The final option is open to individuals around the world who want to participate but are not in the area. Our #BIKE4SIGHT team members from across the globe will be riding from home and submitting photos, videos, and donations to the BTB team. If you register before August 15th, we will hook you up with some cool Bike The Basin 2016 swag for you to sport in your pictures!

Step 2:  DONATE:

Donation options include one-time, weekly, bi-weekly, monthly, bi-monthly, quarterly, semi-annually, and annually. Every little bit helps. All of the proceeds of Bike the Basin go directly to the Curing Retinal Blindness Foundation, a 501(c)(3) non-profit organization dedicated to finding a cure for this rare eye disease.

To donate via check, make checks payable to:
Curing Retinal Blindness
35 Sienna Circle
Ivyland, PA 18974

Step 3:  START A TEAM & TELL YOUR FRIENDS!

Sharing is caring. This event is giving families a fun day outdoors while working toward curing degenerative retinal disease. We look forward to seeing you soon, whether it be in person or as part of the #BIKE4SIGHT movement across the world. Together we can make a difference. Together we can help to cure CRB1 for children. AND, WE CAN HAVE FUN WHILE WE DO IT!

CONTACT US, LIKE US, and FOLLOW US!:

Email – curingretinalblindness@gmail.com

Phone – 267-327-4859

Web – http://crb1.wpengine.com/

Facebook – https://www.facebook.com/curingretinalblindness/

Twitter – https://twitter.com/CureCRB1