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January 2013
In This Issue
The CEO's Corner
Support and Education Update
Development Update
Research Update
Advocacy and Awareness Update
Hydrocephalus in the News - Raising Awareness

 

The HA's Mission is to: 'Eliminate the challenges 

of hydrocephalus'  

 

Upcoming HA Events 
ODE TO A PEDIATRIC NEUROSURGEON 
Never sleeping,
Family...Who?
Cries of children
Parents, too-
Breaking hearts
Brilliant smiles
Holding hands,
Sitting just awhile.
Eyes that tear
Hearts that ache
Wish you could fix
All who come to you this day.
Bone tired, never enough sleep,
Hugs from parents
And their children, keep
You forging on
Day by day
Praying you are helping
In some small way.
When in truth, all be told
You are a hero
Strong and bold
To the parents
And their children, too.
YOU,
Pediatric Neurosurgeon
Are OUR hero
By all that you do.

2008 Debby Buffa
All Rights Reserved


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The CEO's Corner
HA CEO Dawn Mancuso

 

As I sit down to write this blog, my mind is full with plans, hopes, and dreams for this New Year. 2013 is the Hydrocephalus Association's 30th Anniversary year, and the staff and board wants to spend some time in the next 12 months commemorating the rich legacy built by all of our volunteers, celebrating the robust community we have come together to foster, and recommitting our resources to end the challenges of hydrocephalus.

  Read more   

Support and Education Update
 
Hydrocephalus is a chronic condition affecting people of all ages. As we deal with the challenges of hydrocephalus, our caregivers are there to guide us and help us through those challenges. They are our parents, siblings, friends, doctors, nurses...who give us unconditional support. 
 
Development Update
Join the Professional Member Society
 

The Hydrocephalus Association invites members of the medical and research community to join the Professional Member Society today. As a member, you will demonstrate your commitment to HA's mission and the thousands of families that we serve. To join, simply click the below link or call 301-202-3811 and we will complete your membership over the phone. 

 

Our Season of Giving Campaign
 
As the year drew to a close, members from our community shared stories of both giving to and receiving from the Hydrocephalus Association. We would like to thank everyone who participated in our Season of Giving campaign, making it possible for us to continue providing education and support to individuals as well as to fund critical research initiatives. Read our inspirational stories from our community.
 
My name is Tracy, and I was born with hydrocephalus. My condition went undetected for 23 years, until one morning I woke up and drove to work and was not able to get out of my car. Read more...
 
 
My name is Megan, and I'm the big sister of Brady. My brother was diagnosed with hydrocephalus at birth, and I want to help find a cure. Read more...
 
 
I was diagnosed with Normal Pressure Hydrocephalus(NPH)after over 15 years of experiencing a slow progression of seemingly inexplicable mental and physical decline. Read more...
 
 

I'm writing in memory of my daughter Ellen who passed away on July 17, 2006. She was my youngest daughter and had two brain surgeries, first an ETV followed by a shunt placement.Read more...

 
 Research Update

The Hydrocephalus Association would like to congratulate Dr. Michael A. Williams on being named president of the International Society for Hydrocephalus and Cerebrospinal Fluid Disorders( ISHCSF). The announcement was made at the association's conference in Kyoto, Japan which took place October 19 - 22, 2012.

  

Read more 

Advocacy and Awareness Update

 

by Randi Corey

When I was a child one of my favorite parts of Thanksgiving Day was watching the Macy's Thanksgiving Day parade from New York City on television. One of the tidbits of information they imparted that impressed me, even at that young age, was that the day after the parade they would start working on next year's parade. 

 

Read More 

Stepping Out of Your Comfort Zone 

 

by: Mindy Weinstein

Be Brave and Share Your Story! You Never Know Who Will Step In and Support You. At the age of fourteen, I didn't want to be viewed differently. I didn't want to be labeled as "the girl who had brain surgery and almost died."  Years later, I have tried to change this way of thinking.

 

The Other Side of the HA WALK 

 

...Or, There's More Than One Reason to Participateby Randi Corey

It's not unusual for families to travel to participate in a HA WALK. Most of the families participating come from within a 100-mile radius (or two hour drive) of the WALK site. But we've had families travel much farther - in Florida we had a family drive for 7-hours to attend the South Florida WALK.

Hydrocephalus in the News - Raising Awareness
Have a Heart Home Builds Custom Home for Girl with Hydrocephalus

 

The Parker family received an early special holiday gift when the Have A Heart Home program chose their family from a pool of applicants for a custom-built home in Utah. 

  

Read more 

Michael A. Williams, M.D., Named President of International Society for Hydrocephalus and CSF Disorders 

 

Dr. Michael Williams, our 12th Annual National Conference co-chair and member of our Medical Advisory Board, was named the President of the International Society for Hydrocephalus and CSF Disorders at their conference in Kyoto, Japan. 

 

New Study in Iraq Finds Elevated Rates of Hydrocephalus and Neural Tube Defects 

 

Arizona State University Professor Emeritus, William Arnold, writes an article for the The Arizona Republicexploring NPH and dementia. 

 

Monitor for Detecting Changes in Brain Pressure Heading to Medical Trials 

 

The Wisconsin State Journal reportes on Dr. Josh Medow, a neurosurgeon with the University of Wisconsin Hospital, created a monitor that can detect changes in brain pressure and send signals to a handheld scanner. The device is now heading into animal trials. 

 

New Partnership Will Benefit the Speed Medical Devices Get to Market 

 

The first public-private partnership, called the Medical Device Innovation Consortium (MDIC), will prioritize the needs of the medical device community and fund projects to help simplify the process for medical devices to reach market. 

 

Social Security Disability and Hydrocephalus 

 

SocialSecurity-Disability.org shares information about qualifying for SSD under the Blue Book and under the Medical Vocational Allowance. Please note that SocialSecurity-Disability.org is an advertising service paid for by the lawyers and advocates whose names are provided in response to user requests. 

 

Cynthia Solomon Receives Spirit of Excellence Award 

 

Cynthia Solomon, a founding member of the Hydrocephalus Association for which she won HA's Distinguished Achievement Award, has been awarded the Spirit of Excellence Award by theCalifornia Office of Health Information Integrity (CalOHII) by Deputy Secretary for HIE Pamela Lane. She was honored for founding FollowMe, a web-based personal health record company. 

 

Successful Surgical Procedure on Infant to Treat Hydrocephalus and Extreme Macrocephaly 

 

Neurosurgeons at All Children's Hospital/Johns Hopkins Medicine and the University of South Florida Morsani College of Medicine successfully performed back to back surgeries on an infant within the first week of life to treat hydrocephalus and extreme macrocephaly. 

 

Long Island School WALK Featured on Local Television Program 

 

Waldo Cabrera of My Long Island TV program reports on this year's 2nd Annual Hydrocephalus Walk at Eugene Auer Elementary School on Long Island, New York. Mia Padron started the WALK at her son's school to raise money and awareness for the Hydrocephalus Association and the several students within the district affected by hydrocephalus.

 

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