“Fall back” isn’t the way to start off this season!

by Dawn Mancuso, CEO

As September comes to a close, and we all start thinking about what fall will bring, we often talk about the cooler temperatures, the changing color of the leaves on the trees, the children going back to school, and the shortening number of daylight hours.

This year, we hope you also thought of Hydrocephalus Awareness Month, or HAM as we’ve been affectionately calling it in our offices. The goal of Hydrocephalus Awareness Month is to bring attention to and understanding about the condition of hydrocephalus among a number of key target audiences, such as public policy makers who have an impact on the amount of public funding available for research; the medical and scientific communities who actually dedicate their lives to treating patients and conducting research; and advocates like you and me who can be motivated to share patient stories and experiences with the media, community leaders and others.

Now, not all of us have the desire, experience or time available to come to Washington, D.C. and tell our stories to our legislative representatives. But that’s not the only way to build awareness. Hydrocephalus Awareness Month is all about taking stock of where you are and what you can do given your present circumstances. Are you active on a social media platform? We hope you used one of our Facebook banners on your Facebook page. Do you know a lot of people in your local community? If so, do you regularly share what you know about hydrocephalus with your friends and neighbors? Do you like to do volunteer work? If so, are you helping out with a local support group or hydrocephalus WALK?

Quite a few people did take up the mantle of Hydrocephalus Awareness Month and showed all of us how to make a difference:

Mark Paulissen and Mary Sodano began their 2,500 mile ride across the country to raise awareness about hydrocephalus and to help raise funds. Click here and click here to read more about this unique ride!

State Hydrocephalus Awareness Month proclamations were attained in several states. NY State Senator John Flanagan proclaimed September Hydrocephalus Awareness Month, thanks to the dedication and hard work of HA WALK Chairs Mia Padron and Jackie Davidson. Read more about how they did this. In Arkansas, Governor Mike Beebe declared September Hydrocephalus Awareness Month as well, thanks to the hard work of Cessilye Lawson who connected with Mike Beebe’s office. At the national level, Congressman Leonard Lance recognized September as National Hydrocephalus Awareness Month.

David Walters, Abby Woods, Madeleine Daraowiche, Joyce Schwartz, Milton Newman all shared their unique stories with a special blog, Voices from Our Community.

Members of the hydrocephalus community continued to encourage their Congressional representatives to join the Congressional Hydrocephalus Caucus. Congressmen Joe Wilson and Mick Mulvaney from South Carolina, Representatives James Langevin & David Cicilline from Rhode Island, and Congressman Tim Murphy from Pennsylvania all joined in September! Kudos to Amanda Pierce (SC), and Jenna Sciulli (PA) for their diligence in encouraging this participation!

Many hydrocephalus community members were spotlighted in local media stories this month. Among them were Emma and Chara McLaughlin from Tennessee, Tracy Taback from Connecticut, Katie Cook from Illinois, and Mandy Houston from Virginia. See our featured “Hydrocephalus in the News” column on our web site for these and other stories.

Linda Davis participated on a panel speaking on living with chronic pain for the U.S. Pain Foundation’s INvisible Project. For more information on the Invisible Project, visit the INVisible Project or the U.S. Pain Foundation.

Volunteers ran 14 different awareness-building (and fundraising) WALKS this month, in many different places around the country. Over 5000 volunteers and walkers used their attendance – and their feet! — to raise awareness locally.

We’re so proud of all of those who took the initiative and got involved. Hydrocephalus Awareness Month may now be behind us for this year, but it’s not too late to have an impact and to help build awareness all year long. Check out our new Advocacy Toolkit on our web site – it will give you lots of easy-to-implement ideas for making your voice heard now and in the future.

Hydrocephalus may not be a rare condition, but in some circles, it is rarely discussed and understood. Help us move forward – not fall back. Let’s change awareness around hydrocephalus – get involved today!