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December 2012
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

 

It seems everywhere I turn these days, someone or something serves to remind me just how blessed I have been. That's not to deny that I, like everyone, has challenges, sometimes very tough challenges. Yet, at this juncture - my one year anniversary of working for the Hydrocephalus Association - I am drawn to look back at what has transpired these last 12 months and appreciate not only what has been accomplished but more importantly, the wonderful people I have come to know along the way.

  Read more   

Support and Education Update
 
The article in Parade Magazine,What If Grandpa Doesn't Really Have Alzheimer's? plays an important role in our quest to educate the public about the form of hydrocephalus called Normal Pressure Hydrocephalus or NPH. The Hydrocephalus Association, along with our Medical Advisory Board, is trying to change that. 

 

November was Epilepsy Awareness month and we would like to address this topic, as seizures are not an uncommon occurrence in people with hydrocephalus. However, no correlations have been found between the number of shunt revisions or the site of shunt placement and the risk of developing seizures.

Read more

 

As the holidays are approaching and technology gadgets become the "gift to give", there has been a concern about shunts and the use of tablets (iPads, Galaxy tablet...etc.) in the recent years. Can they change the shunt's setting?
 

 

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. We'd like to say THANK YOU. 
 
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. 

 

 
When you are affected by hydrocephalus, sometimes the challenges can be overwhelming. You might have asked these very questions yourself: How do I find a doctor I can trustWhat are my treatment optionsWhat are the risks involved with shunt surgery? What are the symptoms of a shunt malfunction? Where can I find emotional support
 
 
The Legacy Society provides an opportunity for supporters to ensure the organization's research, support, advocacy and education work continues by placing a "future" gift to the Hydrocephalus Association in their wills, trusts or estate plans. As shared by Paul Gross, Legacy Society Founding Member, "I feel the effects of HA every day in the care of my son, William, who has hydrocephalus. I have joined the Fudge Solomon Legacy Society because of the ongoing impact of the Association on my family and my desire to see its mission fulfilled."
 
 Research Update

We are excited to announce the next stage in our relationship with the Rudi Schulte Research Institute (RSRI)as we partner with them to find significant advances in the treatment of hydrocephalus. RSRI has long been the sponsor of our research keynote speaker at our bi-annual education conference.  

  

Read more 

Advocacy and Awareness Update

 

The elections are behind us, and with the results now in hand, we can refocus our fight for basic research funding towards better treatments and eventually a cure for hydrocephalus. 

 

Read More 

Hydrocephalus in the News - Raising Awareness
Spirit of America Ride Reaches Denver

 

Mark Sodano and Mary Paulissen complete their 2,500 mile cross-country bike ride benefiting the Hydrocephalus Association. The ride was sponsored by Celsius drink company.

  

Read more 

Birmingham Reporter Finds a New Hero 

 

James Phillips of the Daily Mountain Eagle shares a moving story of support for 5-year-old Addox Morrow as Addox's team prepares to walk on November 11th in the 5th Annual Alabama Hydrocephalus Association WALK. 

 

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

 

The Atlanta Pediatric Device Consortium (APDC) is helping fund the development of a shunt that can be monitored wirelessly. The goal of the design is to simplify the detection of shunt malfunctions while reducing the patient's exposure to harmful side effects such as radiation from CAT scans to examine the shunt. The APDC is comprised of Children's Healthcare of Atlanta, Emory University, and Georgia Tech. 

 

The Riverfront Times Dispels Local St. Louis Legend 

 

Local St. Louis teens had been seeking out a mythical family with large heads. Reporter Leah Greenbaum dispels the myth with a concise explanation of hydrocephalus. 

 

Growing Number of Businesses Offer Services to Improve Cognitive Skills 

 

The New York Times reports on cognitive training centers which focus on developing cognitive skills in youth and adults. 

 

Doctors and Lawyers in Houston Help Low-Income Families with Medical Care 

 

Doctors at Texas Children's and members of the Houston Bar Association have teamed up to help low-income families navigate the paperwork and red tape to make sure they are receiving the necessary medical services and benefits available to them. 

 

Local ABC Affiliate Airs Announcement for the Birmingham WALK 

 

The local ABC 33/40 news station in Birmingham, Alabama, aired a public service announcement hosted by Charles Daniel, meteorologist, for the 5th Annual Birmingham Hydrocephalus WALK which took place on Sunday, November 11, 2012. 

 

Risk for Developing Epilepsy Within First Year After TBI 

 

Eleanor McDermid, Senior medwireNews Reporter, reports on a study that finds that patients are at particularly high risk for developing epilepsy during the first year after a traumatic brain injury (TBI). TBI includes injuries caused by intracranial bleeding. Dr. Chien-Chang Liao of the Taipei Medical University Hospital, Taiwan, and co-workers in the Journal of Neurology, Neurosurgery, and Psychiatry reported the findings. 

 

APDC Helps Fund Self-Monitoring Shunt 

 

The Atlanta Pediatric Device Consortium (APDC) is helping fund the development of a shunt that can be monitored wirelessly. The goal of the design is to simplify the detection of shunt malfunctions while reducing the patient's exposure to harmful side effects such as radiation from CAT scans to examine the shunt. The APDC is comprised of Children's Healthcare of Atlanta, Emory University, and Georgia Tech. 

 

Legendary Colombian Folk Musician Passes After Battle with Hydrocephalus 

 

Colombian folk music legend Lizardo Diaz passed away at the age of 84 in Bogota after a long battle with hydrocephalus.

 

Dr. Charles J. Winters Awareded 'Top Doctor' in US News and World Report 

 

The PR Newswire reports that Dr. Charles J. Winters, of Frederick Memorial Hospital, Maryland, is listed by US News and World Report as a 'Top Doctor.' Dr. Winters is a neurosurgeon with a a specialized interest in adult onset hydrocephalus and the surgical treatment of dementia.

 

Deepak Chopra Talks Reinventing the Brain 

 

Deeprak Chopra joined Dr. Sanjay Gupta on CNN to shares his thoughts on the current "Golden Age" of brain research and how it is changing the way we think about the brain.

 

 

Christine Bartel, reporter for CBS Denver's Aging Independently series, reports on local Denver resident, Bill White, and his diagnosis and treatment of Normal Pressure Hydrocephalus. Dr. Mark Watts of Exempla Denver Neurologic and Spine Associates, Mr. White's neurosurgeon is also interviewed. 

 

Children's Hospital in Houston Performs ETV/CPC Surgical Technique to Treat Hydrocephalus 

 

Children's Memorial Hermann Hospital in Houston, Texas, introduces the surgical treatment option of endoscopic third ventriculostomy (ETV)with choroid plexus cauterization (CPC) for hydrocephalus.

 

ETV Procedure Creates Market Challenge to Shunt Manufacturers in Europe 

 

The Millennium Research Group (MRG)- the global authority on medical technology market intelligence - has completed a study that shows that the the European neurosurgical and neurovascular medical device market will grow only slowly through 2016. Treatments such as endoscopic third ventriculostomy (ETV) are contributing to slowed growth for shunt manufacturers.

 

Drug Shrinks Brain Tumors and Aids in Resolution of Hydrocephalus 

 

A drug originally developed to prevent the rejection of transplanted organs has now been shown to dramatically reduce a particular kind of brain tumor in patients with tuberous sclerosis complex (TSC). Treating the tumor allows patients to also see improvement in the reduction or even elimination of hydrocephalus.

 

Video Interview with Dr. Warf on his MacArthur Foundation Fellowship Award 

 

The NINDS NIH posted a video on Dr. Benjamin Warf and his MacArthur Fellowship Award for his contribution to hydrocephalus research and treatment. 

 

Two-Part Series in the NYT on Alzeimer's Also Addresses NPH 

 

Writing for the New York Times in a two-part series,Dr. P. Murali Doraiswamy, a psychiatry professor at Duke University Medical Center and an author of "The Alzheimer's Action Plan," answers reader's questions about Alzheimer's Disease and addresses misdiagnosis of Normal Pressure Hydrocephalus (NPH).

 

12-year-old Girl Interviewed by NBC on Her Journey with Hydrocephalus 

 

12-year-old Gabriela Montes Garzon is interviewed with her mother, HA's own Amanda Garzon, about her journey with hydrocephalus from being a preemie in the NICU to a 6th grader at The Diener School by NBC Washington Channel 4 News reporter Seth Lemon.

 

College Graduates Celebrates with the Medical Team of Comer Children's Hospital 

 

Kimi Sorensen and her mom promised to have a party for the doctors, nurses and staff at the University of Chicago Medicine Comer Children's Hospital when she graduated from college. And she did!

 

 

The Hollywood Reporter reports on Donald Bellisario's current court case suing CBS for revenue owed to him when he was denied the opportunity to work on NCIS: Los Angeles as outlined in his contract. CBS is requesting his medical records around his recent treatment for hydrocephalus to determine if he was able to do the work due to his medical condition.

 

Local South Florida Family Interviewed by Local News Channel 

 

The Rodger's family are interviewed by ESPN 760/WPTV NBC/West Palm Beach about Alex's journey with hydrocephalus and the South Florida WALK, which took place on November 10, 2012.

 

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