Back to School for Storytelling

-post by Emma Rooney 

Stories may be universal but being a storyteller may not come naturally. While we all have stories to share, it can be a pretty intimidating process to put our stories out-there. The availability of new technologies and new forms of media open up storytelling, but with this, comes the assumption that you should already be able and motivated to tell your own story, completely unsupported. It's supposed to be easy, and everywhere you turn you are being asked to freely share your story. I recently stayed at a hotel, that placed a postcard at my bedside table, with the kind request that I share with them a "unique story" of my travel experiences. While this may seem like a cute boutique proposal, intended to add meaning to my stay, I needed to turn over the card to prevent the ensuing nightmares. My anxiety only increases when I'm asked to contribute a story to a cause I actually care about, like raising rare disease awareness. Perhaps I'm not the only one that likes the idea of storytelling but is frightened of the actual doing. I wish that organizations requesting stories would take this into account when soliciting. Stories matter but storytellers need support! Being asked to share is not always enough to get the creative juices flowing or the necessary confidence piping.

Luckily there are a growing number of relevant resources and supports out there. The Centre for Digital Storytelling is a great place to start, especially if you're interested in going beyond pen and paper. Once I decided I would create my own digital story, I watched many of their story examples for inspiration and to try to work out what a digital story actually is (what I should be doing). They also offer an interesting array of workshops, including online options, and a collection of resources for sale. Yesterday I felt  fortunate to join a short, free webinar, "The Role of Narrative in Public Health”. The hour long session didn't allow me to unpack all my worries but certainly there were a number of helpful starting points, including considerations around balancing process (the making challenge) and media products (what everyone's asking for). Most reassuring was the importance placed on ethical practice, especially essential when dealing with health stories. The Center's ideas on this topic are publicly available online and while the emphasis here is on conducting storytelling workshops, it may still be helpful thinking for health groups wanting to use more stories.

Also don't miss out on the currently running Storymakers 2014, from TechSoup. Yes, they're also looking for your stories with a storymakers challenge, but they're offering cash prizes for winning submissions and a generous lineup of events, including today's Global Tweet-chat at #Storymakers2014. If you missed the first two free webinars on storytelling, with great examples and practical advice shared, you can still access all the information on the achieve:

• Storymakers Round-Table: Creating a Break-Out Story   
• Storymakers Super-Short Videos: Vine, Instagram, and More!         

The super-short video webinar would be a great offering for anyone from the Gaucher rare disease community interested in entering the National Gaucher Foundation video contest but unsure where to start. The submission deadline has been extended to September 15th. Videos are intended to support efforts of the upcoming Gaucher Awareness Month in October.

Visit our links page for more storytelling tool suggestions and check-out the My Normal story making handouts.                                     

Gaucher Video Contest

In celebration of its 30th Anniversary, the National Gaucher Foundation, Inc., in the United State, is promoting a video contest that allows entrants to tell their unique Gaucher story and get the chance to win prizes and have their video showcased to a national audience. The contest closes August 29th, 2014 and full details (including contest guidelines) are available on the Foundation's website.

To promote the contest, Rosina Papantonio, Marketing Director at the NGF, agreed to be interviewed by Emma on video making, storytelling and other things. If you're thinking about entering the contest, Rosina offers some great tips to consider, sharing her own experience of promoting awareness of Gaucher disease and cancer through video.

Question 1- Why did you decide to make the Apples, Oranges, Cancer and Gaucher video?

In 2011, we were not sure that I would actually make it out of the condition in which I found myself.  I had small lymphocyte cancer (SLL) and  small lymphocyte leukemia (CLL).  Then a much more serious cancer was diagnosed 3 1/2 months later with a much worse cancer called diffuse large B cell Lymphoma.  The doctor missed it and as God would have it - it was picked up by Shands teaching hospital in FL.   However, I was not receiving the treatment that I needed to combat such an insidious cancer.  The good part is that I did wind up at Emory University Hospital in GA.  That is why I am here today.

At some point, I decided that I wanted to make a difference in the life of others who had cancer and those who had Gaucher disease and knew that I would be the perfect person to produce a video, based on my Gaucher background and my personal cancer experiences and the fact that I am in marketing.  I wanted people to understand there are few warning signs about cancer, but that Gaucher disease had many warning signs and there was treatment.  I wanted to present something hopeful, but real in case I never got another chance.

Question 2- How are story videos a useful tool for the Gaucher community?

When people see real people talking about their real experiences with anything, others are more apt to trust them and feel a kinship with them. As we know, those with Gaucher disease and those who have it in their family run the gamut of emotions.  Between pain, happiness, sorrow, loss of a child, extreme changes in their lives, having treatment for their entire life and on and on.  Those not involved with Gaucher disease would be astounded to learn not only how Gaucher can affect the body, but the very serious comorbidity issues as well.  To see and hear people speak from these experiences is a very powerful and visceral experience for many.  It moves people in an entirely different way than hearing about the disease through a doctor or institution. 

Question 3- What's been the experience for you when you discover a new video about Gaucher and how do you share it?   

Among many other uses like meetings and conferences, there are a few ways we share.  New videos go right into our media library and we rotate and feature them on our homepage and I use them in our internet banners and SEM ads.  It is remarkable how much better Gaucher ad responses are when you give the public a real life person or people in the form of a video.  It is the difference between a yawn and a gasp.

Education is of paramount importance, so however we have to get to people, we will use any of the marketing devices, systems, forums and platforms at our disposal.  If you have Gaucher and you do not know it, how can you be helped?  In 1984, without treatment, what could anyone do or say to help save people with Gaucher?  Today, because we have treatment, we can help people, but without education how would anyone know 1) that Gaucher exists and 2) that there is a treatment for Types 1 & 3.  Bottom line is all of the people involved with marketing and treating Gaucher help to save lives.  That was barely possible in 1984 - before Genzyme's Ceredase came on the market.

Question 4- As someone who has made a video, what's one tip you would share with others looking to get started on their own health story video?  

Touch people's hearts.  Be real and show your heart and your emotion. Your intellect will rule as to what you should say as it relates to factual information, but no one can take away from you your own experiences, how you were affected and how it helped or hurt you.  Nothing takes the place of your own humor about your disease and your own philosophies about your diseases(s). If God spoke to you while you were walking one day, that would be remarkable and uplifting.  It does happen to people.  Wouldn't you like to know someone to whom that happened and wouldn't it be comforting?  Wouldn't you like to share that with someone who was in their darkest hour?  People can help others through sharing, comforting, caring and touching their lives.  Sometimes, in the smallest way.  You, Emma, never may know all of the lives you have touched.  I am in some ways, a recipient myself.  Because you touch me, I want to help you.

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Be sure to check-out the NGF Video Contest. Contest closes August 29th, 2014.