Hydrocephalus in the Spotlight

Tags: , , , , , , ,

Dawn Mancuso, CEO, Hydrocephalus AssociationI don’t know about you, but I can’t tell you how much time I’ve spent in the past weeks talking to so many people who have been incredibly motivated by the ALS ice bucket challenge going around on social media.

If you don’t know about it (hard to imagine, considering the attention it’s gotten), the ice bucket challenge was started by a couple of people who are directly affected by ALS (Amyotrophic Lateral Sclerosis), often referred to as “Lou Gehrig’s Disease.” The concept was simple – you make a home video of someone dumping a bucket of ice water over your head, post it on your Facebook page, and challenge your friends and family to do the same within 24 hours. If they don’t take the challenge, they are supposed to donate $50 to an ALS charity. If they do take the challenge, they donate less — $25.

The concept went viral and at the last count I saw, the ALS Association has received over $100 million in donations from people around the world. Talk about raising awareness, funding support & research! It’s amazing. And wonderful to see. ALS is a devastating disease that deserves more awareness and better treatments. Many congrats to them.

That said, every other disease-based group, including us here at HA, is left to wonder – why didn’t we think of that? How can we do something similar to motivate our core volunteers to use social media to spread the word – and raise that kind of money to fund more research? From my perspective, the beauty of the ice bucket challenge was that it started as the personal action of one or two individuals (not by a group of publicity experts) and through the power of today’s communication vehicles, spread across the globe in a remarkably short period of time. The keys to its success include:

  • Just about anyone could participate – all it took was a smart phone and a Facebook account.
  • It was easy – it didn’t require hours of commitment or tons of money.
  • It gave people an opportunity to get involved and feel good about contributing to something bigger than themselves.
  • It was fun. Let’s face it – some of those videos were hysterical!

For the hydrocephalus community, this should be a challenge to us all to think more creatively about how to use the resources at hand to build the kind of recognition and support for research we so sorely need. We clearly have a long way to go.

However, I am happy to say we are starting to make progress, thanks to industrious and dedicated volunteers who took a look around them and found a way to use what they had at their fingertips.

For instance, Susan Fiorella, an HA member from the D.C. area, made a contact through the company she works for (the Mid-Atlantic Permanente Medical Group) to make her case for greater awareness and support. One of the results was that she captured the attention of the President & CEO, Dr. Robert Pearl. As it turns out, Dr. Pearl is a regular contributor to Forbes Magazine. He was so moved that he showcased her story and the need for more hydrocephalus research in a recent edition of the magazine: A Mother’s Plea to Save her Child from a Neglected Disease.

Sitting by her daughter’s bedside after three back-to-back brain surgeries, Chara McLaughlin, one of our WALK chairs from Chattanooga, Tennessee, shared her feelings about the experience and an update on her daughter Ema’s progress on her CaringBridge blog and through Twitter and Facebook. She tagged Darby Schumacher, then a contestant in the Miss Tennessee Scholarship Pageant (the Tennessee component of the Miss America pageant competition) and the then reigning Miss Tennessee Shelby Claire Thompson. Both ladies were part of a group of volunteers who helped out at the 2013 Chattanooga WALK. What happened next was remarkable. Darby and Shelby retweeted Chara’s message, and invited Ema to attend the opening night ceremony of the 2014 Miss Tennessee Pageant in Jackson, TN. At the end of the evening after the ceremony had ended, Ema, her head still newly shaved from her surgeries, was invited up on stage to twirl around, and Shelby put one of Darby’s sparkling crowns on Ema’s head. The media from all across the state – and all of the contestants – loved the experience, and got an education about the challenges of living with hydrocephalus. Darby, Shelby, and the newly crowned Miss Tennessee, Hayley Lewis, kept the story alive by tweeting and posting to their Facebook pages. Darby shared, “Last night showed me what being Miss Tennessee is all about. It’s about making people feel special and sharing joy and love with children .” And Hayley recently took the ALS ice bucket challenge for both ALS and for hydrocephalus, to honor Ema.

Another example is Jennifer Pope from Los Angeles who works for the LA Kings hockey team. She used her business contacts to get Green Bay Packers’ linebacker Clay Matthews III involved in the Los Angeles WALK. Clay has issued a challenge – everyone who donates at least $10 to the LA WALK will automatically be entered into a drawing to win two tickets to the Packers (vs. Panthers) game on October 19 at Lambeau Field (including pregame field passes), Delta Airline vouchers, a two-night stay at a Marriott hotel, and autographed merchandise. Obviously, the challenge has gotten a lot of folks excited, but having Clay’s name attached to the challenge has helped us reach many more people than we normally would have. Click here to enter the drawing to win!

Anne Kocsis, a new WALK co-chair in Central Pennsylvania (along with veteran chair Danielle Gutshall), called on her neighbor and family friend, Brian Osborne, who was a contestant on season 10 of The Bachelorette, a national television program. As a friend to the Kocsis family and to their son Matt (who is a senior at Cumberland Valley High School), Brian helped to build publicity for the WALK by attending the event, wearing a Team shirt, and tweeting (and retweeting) to all of his contacts on Twitter to build the excitement around the day. Brian has been an active advocate for hydrocephalus awareness since signing on, actively tweeting about the WALK as well as doing a number of press interviews about hydrocephalus and the Hydrocephalus Association. Click here to read the blog on Brian’s participation.

We can’t thank Susan, Chara, Jennifer and Anne enough for what they’ve done. We couldn’t buy this kind of exposure…at least not yet! Now, we all don’t have famous neighbors or important bosses. But all of us can do something. All we need to do is look around us and see what we do have – and be creative! Happy Hydrocephalus Awareness Month! #HAM2014

There are no comments published yet.

Change this in Theme Options
Change this in Theme Options