A New Meaning for the Word Freedom

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dawn mancusoMany of us celebrated a holiday called the 4th of July here in the United States this past weekend. On the East Coast, the weather was beautiful, if a bit warm, meaning that many of us participated in the typical celebratory activities – family gatherings, an outdoor barbecue, fireworks displays, maybe time spent at a beach or a pool – all of which have become hallmarks of summertime fun. Yet, we all know there’s a deeper, more somber meaning to this holiday – one where we remember that the freedoms we enjoy here in the United States were hard won, first with a vision set by a congress of people from all walks of life who shared a common goal, and secondly by the hardships of many who fought (and continue to fight) for that freedom.

With the utmost respect and a request for forgiveness in advance from our forefathers and the many veterans and troops who have sacrificed so much for our country, I see many parallels to the fight all of us are engaged in here at the Hydrocephalus Association (HA). We are an organization of people, by people, for people, born by a common vision: to eliminate the challenges of hydrocephalus. This means that HA does many things every day:

  • HA supports and educates new patients, caregivers, medical practitioners, members of the media, public policy makers and others about the effects of this challenging condition by providing information, educational materials & events, opportunities for engagement with others, and one-on-one support.
  • HA leads the community in developing a research agenda to drive progress.
  • HA funds and provides substantial administrative and leadership support to move that research agenda forward, directly funding research; facilitating collaboration among researchers, scientists and medical practitioners; and distributing information about the state of research in the field.
  • HA advocates for more public support of research, public understanding/acceptance of the issues faced by hydrocephalus patients, and adoption of newer, better treatment options.

We are also a community of people fighting for freedom: freedom from the challenges posed by hydrocephalus.  We know all too well what those challenges are, and dream of the day when there is:

  • Freedom from the fear and panic that comes with every headache;
  • Freedom to travel as you please, without worry about where the nearest neurosurgery facility is located and how familiar they are with treatment of hydrocephalus;
  • Freedom from the millions of brain surgeries now required to treat hydrocephalus;
  • Freedom from being reliant on shunts that may at some point need to be replaced (through multiple brain surgeries) due to obstruction, infection or malfunction.
  • Freedom from the recurring doctors’ appointments;
  • Freedom from worry about whether or not  certain activities (sports, travel to high altitudes, etc.) will have negative effects on our health;
  • Freedom from the shame of having a condition that most healthy people don’t understand or even know exists;
  • Freedom from the possibility of having the condition being misdiagnosed;
  • Freedom from the risks and side effects of brain surgery by having a greater range of treatment options, with an opportunity to do something other than implanting a shunt, doing an ETV, or doing nothing.
  • Freedom from the constant worry that you don’t know when the next shunt obstruction, infection or malfunction will happen, and that there are preventative steps that could be taken to avoid them.
  • The freedom that comes with a definitive way to prevent the condition from occurring altogether, and a definitive cure for those who already have it.

There is hope in the work being done around all of these dreams and activities, thanks to the generous support of volunteers and donors who join in the fight and dedicate their time, talent and resources. We need everyone to lend a hand so that one day these dreams will become a reality, and we can all spend a future 4th of July celebrating a different kind of freedom.  Please visit our website or call our offices to find out how you can get involved!

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