From the CEO: Another way to say “I Care”
As 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. Read more
Normal Pressure Hydrocephalus Guidelines
By Tom Smith and Michael Williams, MD
In 2000, the late Anthony Marmarou, PhD convened an independent study group to begin the process of addressing one of the major issues surrounding Normal Pressure Hydrocephalus (NPH). After convening, these experts published five guidelines concerning NPH. Read more
Hydrocephalus Awareness Hits the Ice
By Jordan Faigen, National Campaigns Manager
Are you looking for great ways to raise money as a WALK participant? Eileen Rodger, the HA South Florida WALK Chair, spent an evening on the ice and raised over $1,000 in a matter of hours. Read her inspiring story and explore your community for creative fundraising opportunities, then share your success with us, email jordan@hydroassoc.org.
Tributes to a Passionate NPH Physician Advocate — The Passing of Harold O. Conn, MD
Harold O. Conn, MD was a world-famous doctor specializing in diseases of the liver. After his retirement he developed Normal Pressure Hydrocephalus (NPH) and thus embarked on his second career which was to study and spread awareness of this condition. His perspective was unique and informed, and his work was generous and insightful. In this article HA board member Marvin Sussman, PhD and Carlos Hakim, PhD pay tribute to Dr. Conn and his work. Read more
Join the 2012 Virtual WALK Community Today
By Jordan Faigen, National Campaigns Manager
While our HA WALK events are reaching new cities year after year, many times families and individuals still cannot attend even the closest event. We started our Virtual WALK program last year and we are pleased to announce that we are launching our 2012 Virtual WALK website! By registering on this website people can create teams or sign up as individuals and fundraise for HA by holding their own small WALK or other event. Read more
2012 Hydrocephalus Scholarships Now Available
The Hydrocephalus Association is pleased to offer nine scholarships to young adults with hydrocephalus. The scholarships are $1,000 each and will be awarded in June. To read more about the instructions, criteria and how to apply please click here. We are accepting applications now through April 1, 2012!
2012 Neuro Film Festival
There is an opportunity to submit a short video to The American Academy of Neurology Foundation telling your story about why more research is needed to find a cure to hydrocephalus. Please read the following on the guidelines and deadline for submission.
Read About Transition Care in Our Hydrocephalus Resource Library
By Tom Smith, HA Adult Services & Outreach Coordinator
A paper by Harold Rekate, MD, ‘The Pediatric Neurosurgical Patient: The Challenge of Growing Up’, published in Seminars in Pediatric Neurology, Vol. 16, 2009 discusses the difficulties faced by children born with hydrocephalus and Spina Bifida as they move from the coordinated care of pediatric facilities to the world of adult care. The article also explores the reasons for these challenges and discusses the need to take steps ahead of time in order to plan for this transition. Read more
2012 Hydrocephalus Association Scholarships
By Karima Roumila, MPH, Community Programs Director
We are very pleased to offer nine scholarships to young adults with hydrocephalus. On the 18th year of the program we are honored to announce the amount of each scholarship has been increased to $1,000.
Katharine Magradey, 2011 recipient
These scholarships are funded by the Hydrocephalus Association and by two Gerard Swartz Fudge Memorial Scholarship Funds, two Morris L. and Rebecca Ziskind Memorial Scholarship Funds, two Anthony Abbene Scholarship Funds, the Justin Scot Alston Memorial Scholarship Fund, the Mario J. Tocco Hydrocephalus Foundation Scholarship Fund, and the Giavana Marie Melomo Memorial Scholarship Fund. Read more
From the CEO: Auld Lang Syne
I don’t know about you, but the start of every new year makes me a little philosophical. Maybe it’s all the talk about resolutions. Maybe it’s just the best time for me to take stock of all the good things that have happened in the last year, and to make plans for the year ahead.
So much has happened in the past year. I took a leap of faith and left an organization for which I have worked very successfully for 15 years, to take on a brand new adventure as CEO of the Hydrocephalus Association. It was a risk, but one I am so glad I took! Everyone at HA – from the staff to the board to the volunteers and constituents – have been so warm and welcoming. And, for someone like myself who is energized and motivated by a worthwhile mission, there truly can be no more rewarding mission than that of this organization and all of the people it serves!
The good news for me – and for you – is that the Association has a long and distinguished history of serving the hydrocephalus community, and still has much potential for making a difference going forward. There are multiple fronts to our battle – namely, research, support, education and advocacy – and while we have come a long way in each of these areas, there is still so much to be done with precious, limited resources.
While we have a great staff at HA – and each day I walk away more amazed at how much they do and how well they do it – there is no way we could do all that we do without the help and support of the volunteers who work with us in some capacity. There are literally thousands of you who offer your time, energy, support and resources, year after year. You organize and attend support group meetings; you organize and participate in fundraising Walks and other special events; you share resources and information with others in the community; you provide guidance and input into what the priorities of the Association should be. In short, you are the magic multiplier that takes our 10-person staff and turns it into an army of dedicated individuals willing to do whatever it takes to eliminate the challenges of hydrocephalus.
What it all comes down to is that the 10 of us are not what constitutes our Association. It is all of you. We thank you heartily for all you have done, and will continue to do. I am in awe of what you have accomplished so far. I am so looking forward to the year ahead when I get to play a part and work with you!
…we’ll take a cup of kindness yet, for auld lang syne!
May 2012 bring health, happiness & prosperity,
Dawn
