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October 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'  


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The CEO's Corner
HA CEO Dawn Mancuso


Hydrocephalus Association CEO Dawn Mancuso reflects back on Hydrocephalus Awareness Month and the many accomplishments of our community in raising our voices. 





Support and Education Update
The current election cycle is an opportunity to follow up on the great work we did in raising awareness during Hydrocephalus Awareness Month. The launch of our Advocacy Toolkit provides information and resources for you to use when interacting with politicians and the media.


The Hydrocephalus Association proudly announces the launch of our Spanish-language information pages on hydrocephalus. Our launch falls at the midpoint of Hispanic Heritage month (mid-September through mid-October) as well as serves as a celebratory ending to September's Hydrocephalus Awareness month.

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Milt Newman's retirement was not living up to expectations due to a slow progression of seemingly inexplicable mental and physical decline. What no one knew was that Milt, then 73, was suffering from Normal Pressure Hydrocephalus (NPH). 


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Madeleine, a junior in high school, was diagnosed with hydrocephalus before she was born. She shares her journey with hydrocephalus over the last 17 years of her life. 

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Development Update
Inaugural Investor Webinar: Delivering on a Promise

The Hydrocephalus Association hosted our inaugural investor webinar, Delivering on a Promise, for financial investors in our Research Initiative campaign. The webinar showcased our current research efforts and provided an update on our transition to Washington, DC. The presentations reviewed several new advances in clinical and basic science discovery as well as a recap of the key outcomes of the 2012 Research Conference on Hydrocephalus. 


The presenters included Paul H. Gross, chairman of the board of the Hydrocephalus Association, Miles Johnston, PhD, of the University of Toronto, and John R.W. Kestle, MD, of the University of Utah. The webinar was hosted by Dawn Mancuso, CEO of the Hydrocephalus Association. 


Read more about our Research Initiatives   

Research Update
Dr. Benjamin Warf, associate professor of surgery at Harvard Medical School and director of the Neonatal and Congenital Anomaly Neurosurgery Program at Children's Hospital Boston, was named a 2012 MacArthur Foundation Fellow by the John D. and Catherine T. MacArthur Foundation. Dr. Warf is recognized for his outstanding work developing new treatments for hydrocephalus while living in Uganda.


Advocacy and Awareness Update


Four years ago, Mia Padron of Long Island, New York, was on a mission to make a difference for the life of her son and all other individuals living with hydrocephalus. She worked with State Senator John Flanagan to have September declared Hydrocephalus Awareness Month for the state of New York. Every year she works with Senator Flanagan to reintroduce the resolution. This year, the Senator invited Mia and her WALK Co-chair and close friend, Jackie Davidson, to accept the resolution in person.



Read More 

September is our busiest WALK Month 

September saw 14 WALKS take place across the country, spanning from California to New York. An estimated 5,000 individuals participated throughout the month. We raised approximately $350,000 from 328 teams. Thank you to the amazing volunteers who have given their time to make these events possible. But we still have WALKs through November 18th and if you can't find a walk in your area, you can always participate through our Virtual WALK program!


Learn more about our WALK program 

See a list of upcoming WALKS

Be a Virtual Walker

Hydrocephalus Facts Shared Across the Virtual World 


Many of you posted our Facebook Banners for Hydrocephalus Awareness Month on your Facebook profiles, thereby raising awareness of hydrocephalus across the virtual biosphere. But it was the FACTS and QUOTES that got our Facebook page humming. Thank you to everyone that participated in the lively conversations around our posts. We will continue to post facts and quotes throughout the year. 


If you have a quote you'd like to share, email them to us through Facebook or at And don't forget, when you like or share an image on Facebook, Facebook posts it throughout its network and raises the profile of our cause even more!


Visit our Facebook Page


Mark Paulissen and Mary Sodano take their spirit of adventure and love for bicycling and turn it into the journey of a lifetime. Sponsored by Celsius drink company, Mark and Mary have challenged themselves to ride 2,500 miles across the country to raise awareness about hydrocephalus and to help raise funds for the Hydrocephalus Association (HA).  


Visit their blog

Hydrocephalus in the News - Raising Awareness
NY State Senator John Flanagan Proclaims September Hydrocephalus Awareness Month


NY State Senator John Flanagan proclaims September Hydrocephalus Awareness Month. Joined by Mia Padron, Senator Flanagan presented the Hydrocephalus Association with a resolution he sponsored to help raise awareness of the hydrocephalus. 


Read more 

BrainScope Company, Inc. Awarded Grant to Study TBI 


BrainScope Company, Inc., a Bethesda, MD based company has been granted research funds to investigate TBI by the Pentagon.


Chicago WALK Appears in Chicago Sun-Times 


The recent Chicago, IL WALK was featured in a recent edition of the world famous Chicago Sun-Times.


Chattanooga, TN WALK Featured in Local 


The, a local news outlet features the story of Chara McLaughlin and Emma, her three year old daughter living with hydrocephalus and how they hope to make a differenc in the upcoming Chatanooga, TN WALK on October 27th. Announces National Hydrocephalus Awareness Month 


Mandy Houston writes an article explaining National Hydrocephalus Awareness Month.   


The Dekalb Times-Journal Shares Story of a Local Family Dealing with Hydrocephalus who are in Need 


The Dekalb T/J tells the story of the Garrett family who's newborn daughter was diagnosed with both hydrocephalus and hydroencephaly.



Rhode Island Representatives David Cicilline and James Langevin join the Pediatric and Adult Hydrocephalus Caucus.


Iowa City Girl Featured in 


Skylar Jacobson was honored as the Iowa Children's Hospital's "Kid Captain." In 2001, at 20 months old, Skylar was diagnosed with a brain tumor and resulting hydrocephalus.  


Ryan Riley of Paducah, Kentucky Will Appear on the 56th Annual Telethon of the Stars 


Ryan Riley was chosen as an adult representative for the 56th Annual Lions Club/WPSD Local 6 Telethon of Stars on November 10th in Paducah, Kentucky. Ryan has had hydrocephalus since birth.


Tracy Taback has Article about Hydrocephalus Published in The Hartford Courant 


Tracy Taback raises awareness about hydrocephalus, shares her personal journey, and announces the upcoming Middlebury, Connecticut WALK which took place on October 6th.


Duke University Study on Stem Blood Cell Infusions to Benefit Infants with Congenital Hydrocphalus 


Baby Tyler, born in Pittsburgh, PA, receives infusions comprised of stem cell blood from her umbilical cord and placenta as part of a study by Duke University blood and marrow transplant program.


Delaware's Hydrocephalus WALK Highlighted in the Smyrna-Clayton Sun-Times 


The Smyrna-Clayton Sun-Times highlighted the Delaware Hydrocephalus WALK which took place on September 22, 2012 at Smyrna High School.


A Novel Micropatterned Microvalve Developed for the Treatment of Hydrocephalus 


Researchers at Arizona State University in collaboration with Phoenix Children's Hospital have developed a novel microvalve with a simple design and implantation that may result in lower failure rates.


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