From the CEO: Another way to say “I Care”

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HA CEO Dawn MancusoAs I sit and write this blog to you, I am thinking about what the month of February means to the hydrocephalus community. Now, for many people, it is the month when the Super Bowl takes place – the culmination of the season-long competition to find out which team goes home with the coveted prize – a Super Bowl ring. To others, especially many here in DC, it’s all about the ongoing political primaries which will ultimately determine who is running for the most coveted office in the country – that of the President of the United States. For those more romantic at heart, February hosts Valentine’s Day, when we are reminded to say “I love you” to all those special people in our lives.

Here at the Hydrocephalus Association, we are focused on different, but similar, things this month. We too are involved in a competition, but ours takes place on multiple playing fields with what I believe to be more important consequences (apologies to all the Giants & Patriots fans out there). If you have been reading the newspaper or watching the news, you know that our country has many challenges before it. That means there is much competition for time, money and other resources – resources needed to help those dealing with hydrocephalus today and to help us find a prevention or cure, hopefully in the not-too-distant future.

HA has committed precious resources of its own to participate in that competition, both on Capitol Hill and in the halls of various government agencies (such as the National Institutes of Health, or NIH; the Department of Defense, or DOD; and the Department of Health and Human Services, or DHHS). Our goals are to raise awareness, raise research dollars, and employ government resources that already exist to overcome obstacles we have been facing for far too long.

letter and link for a copy  of the letter by Rep. DeLauro

Click here to see a copy of a letter Rep. DeLauro recently sent to the NIH on our behalf.

To that end, we have developed close working relationships with key Congressional representatives who are working on our behalf to encourage NIH to dedicate more resources to the study of hydrocephalus and to our educational efforts.We are watching for the appropriate legislative vehicle for a bill that might reinforce this message. We are following leads that may help us to tie into the research being done by the military on traumatic brain injury. We are building our Teens Take Charge program to foster a cadre of young adults willing to speak out about the challenges they face on a daily basis. We are finalizing plans for our day on Capitol Hill, being held here in DC on Thursday, June 28th, in conjunction with the HA Conference. We will be training conference participants about how Hill visits work and about the key talking points. We will also be holding a special Congressional reception that evening, where we will present our first-ever public service award to one of our friends in government. In addition, we are looking at opportunities to work collaboratively with like-minded organizations as a way to leverage our influence. And, we are always looking for new volunteers to assist us in getting all this work done!

As you can see, HA is involved in the competition for resources in the political arena, among others. Back to my original discussion about what the month of February means to us, you might ask, “What about Valentine’s Day?” Well, this might be a little bit of a stretch, but I believe there are multiple ways to say we care. Sometimes it is as simple as sending a note of appreciation. Sometimes it means breaking out of your comfort zone and doing something new that will have a positive impact on another person’s life. Or, it could mean reaching out and committing time and energy to an effort that will make a difference. So, what are you doing for Valentine’s Day? Are you registering for our conference so you can be a part of our day on Capitol Hill? Are you visiting your Congressional representatives in your local community? If you are, please let us know. Are you a teen that hasn’t signed up for the Teens Take Charge program yet?

We hope you will consider this Valentine’s Day challenge as one way to say “I care,” because that’s what we are all here for.

Happy Valentine’s Day to you all! And, just for the record…Go Giants!


1 Comments for : From the CEO: Another way to say “I Care”
    • hweiner
    • February 8, 2012

    Great letter from Rep. DeLauro. Rep. Jim Moran, 8th District VA also strongly supports increased research into the causes, diagnosis, and treatment of hydrocephalus. He wrote a very thoughtful response to my letter asking for increases to the NIH budget for hydrocephalus research. Great to know we have some good people in Congress!

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