July 2014  
In This Issue
The CEO's Corner
Research Update
Support and Education Update
WALK and Advocacy Update
In the News

 

Our Mission:

 

Eliminate the challenges 

of hydrocephalus. 

 

   


Upcoming Events

HYDRO QUEEN

I have a secret to tell you 

I have found the Eighth Sea
It's within me
Yes, I am the Hydro Queen.

 

Sailing on my ship
Crashing over waves
Steering with precision through whatever comes my way
Leading my crew to your shores

 

The cabin shakes and I warn them of the impending storm-
They look at the blue sky
and laugh

 

Suddenly, the sea swells
Flooding the ship and pulling us down
Sending us in a spiral as the ocean swallows us up
Crashing us violently against the sandy floor

 

Slowly I peel my frozen hands off the helm
No use in steering now
I may look like a Queen, but I'm not so sure I like this crown anymore
It's grown heavy over the years.

 

A door flies open and hundreds of yellow butterflies emerge
Releasing with them all that was stowed away
The ship creaks and we begin to float upward
Breaking through the sea we sway twice and balance perfectly on the surface

 

I taste air for the first time and a tear steals away
Mixing with sea water down my cheeks

 

I surrender to the deck with my face towards the sun
I have never felt more royal

 

I let them take the wheel for now
I've got nothing to prove
They'll be amazed what I can do on dry land

 

Our map may have washed away but I know the trip by heart
I will never stop sailing to you.

 

 By Karly Rodriguez Copyright © 2014

 
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We are saddened to share the passing of an icon in the hydrocephalus community - Cynthia E. Solomon. She dedicated her life to helping others. She is a co-founder and lifelong supporter of HA. Her presence is irreplaceable. She will be forever missed. Read More
The CEO's Corner
Community. Clarity. Cure. Our National Conference. THANKS!

 

Our 13th National Conference on Hydrocephalus was held in Portland, Oregon, July 9 - 11, 2014. With over 300 in attendance, our community came together to learn, support one another, and celebrate. We were honored to be joined by our keynote speakers - Adam Page, gold medal paralympian in sled hockey; Dr. Stephen Back, renowned researcher in brain repair and regeneration; and Jerome Kersey, retired all-star forward for the Portland Trailblazers. We are always and forever grateful to our committed medical professionals who led Ask the Expert workshops and informational sessions. Most heartwarming, however, was seeing the personal connections being made by the attendees - from the children at Kids Camp to the teens hanging out in the teen lounge to adults in the hallways sharing a cup of coffee. 

 

Where would you like our 2016 conference to be held? Click here to take our survey.


 
Nobody should face hydrocephalus alone. That's why HA launched the Every Member Campaign to galvanize the community and raise critical funds to provide on-going support and awareness. Please take a moment to send your membership gift today! Every member gift counts in helping HA to fulfill its mission. Send My Gift 
Research Update
Conference Research Update
 

Our 13th National Conference on Hydrocephalus provided a chance for patients to hear the latest research updates from the field. Dr. Carolyn Harris kicked off the scientific dialogue with a review of the Anatomy & Physiology of Hydrocephalus. Our Robert Pudenz Lectureship series highlighted both new research and the sustained influence of the past. In the lecture series, Dr. Stephen Back, from the Oregon Health and Science University, gave the scientific keynote address, presenting an overview of his career, which has been dedicated to developing novel therapies to promote neural regeneration and repair. Dr. Timothy Vogel then gave us an update on his HA funded research on ciliopathies, while Dr. Mark Wagshul gave us an introduction to imaging techniques and his future Rudi Schulte Research Institute-sponsored research on brain compliance. On the final day, an overview and update of the HA Research Initiative was presented by Board Members, David Browdy and Paul Gross. Dr. Jay Riva-Cambrin followed with an update on the HCRN's newly published and ongoing studies, and Dr. Mark Hamilton gave an update on the soon to launch Adult Hydrocephalus Clinical Research Network (AHCRN).
 
Marking the 30th anniversary of the definition of NPH by Dr. Salomon Hakim, Drs. Michael Williams, Carlos Hakim, and Marvin Sussman presented a moving tribute to Dr. S. Hakim, highlighting his pioneering work on shunt design and NPH.
 
We hope to make these presentations available soon via video and audio files. Please stay tuned!
Support and Education Update
Ema McLaughen, one week post-op, was a princess for a day at the Miss Tennessee Scholarship Pageant 2014, after receiving a personal invitation to attend the event by the 2013 Miss Tennessee, Shelby Claire Thompson, and pageant contestant Darby Schumacher. Her trip garnered media attention across the state, helping raise awareness for hydrocephalus. 

Read More

  
Debby addresses how to deal with the fear and uncertainty experienced by parents and caregivers supporting a loved one with hydrocephalus. You can see earlier episodes of Debby's blog on our  Hydrocephalus Association YouTube Channel.  
 
Through A Mother's Eyes: Transitioning from Pediatric to Adult Hydrocephalus Care
Through A Mother's Eyes: Parents Coping with Fear and Uncertainty
 

 

Click here to read the accompanying blog.
You Can Always SMILE! 
 

Shop at AMAZON throughout the year? Go to smile.amazon.com instead of amazon.com and Amazon will donate to HA every time you shop! Same site, same products, same service, different web address! It's not just for the holidays! Start shopping!

WALK and Advocacy Update
 We're Looking for Advocates!

 

Do you have experience working with in the offices of an elected official, at either a national or state level? Have you ever been engaged professionally in the field of advocacy? Learn more about our Advocacy Committee. advocacy@hydroassoc.org. 

  

Advocacy Committee Application

Our new year of HA WALKs and special events is underway. We have 39 WALK sites this year plus our Virtual WALK for those with no WALK in their area. We kicked off our WALK season in Portland, Oregon, to great success. Thank you to Tara and Jerrod Miller, our Portland WALK Chairs. We have also had two school WALKs - the Jennie E. Hewitt Elementary School WALK on Long Island, NY, under the leadership of Andrea Moore with help from Mia Padron, and the Silverdale Baptist Academy School WALK, under the leadership of Chara McLaughen, our Chattanooga WALK Chair.

Where will you WALK this year? View our 2014 WALK Schedule!
In the News

Charlotte HA WALK Featured on WCCB Charlotte

 

The 2nd Annual Greater Charlotte Hydrocephalus Association WALK will take place on September 13, 2014, at Elizabeth Park. 

U.S. Troops Experiencing Increases in Epilepsy and Hydrocephalus, Among Other Conditions
 
Roll Call spotlights injuries and medical conditions on the rise in U.S. Troops who have served in Iraq and Afghanistan.
Videos from the IF Global Conference
 
View videos from IF's 25th International Conference, GENErating Changes, in Buenos Aires, Argentina, on their YouTube channel. 
One Cause of Hydrocephalus Linked to Genetic Function 
 
Researchers at Case Western Reserve University have found that a malfunction in specific genes triggered hydrocephalus in mouse models. 
Walking 30 Miles for Hydrocephalus Awareness
 
A.J. Alley will embark on a 30 mile walk on August 17, 2014, to raise awareness and funds for hydrocephalus and the Hydrocephalus Association. 
Maryland Swim Team Raises Money for Hydrocephalus Research 
 
A Bethesda, MD, swim team hosted a swim-a-thon to support Team Hydro in their efforts to raise awareness and money for hydrocephalus research. 
Newly-crowned Miss Tennessee Meets Little Ema
 
WRCB Channel 3 out of Chattanooga covers the newly-crowned Miss Tennessee's Chattanooga visit where Shelby Thompson spent time with little Ema McLaughen, the 5 year old girl who stole the hearts of the pageant contestants and attendees during the 2014 competition. 
A Home Filled with Love 
 
The Harlin family recently adopted two children from the Ukraine, one who has cerebral palsy and hydrocephalus, among other conditions. 
Global Partners Unite Around Spina Bifida and Hydrocephalus 
 
The NCBDDD, in partnership with Boston Children's and IF, co-hosted the Spina Bifida and Hydrocephalus Partner Engagement Meeting, April 22, 2014. 
Little Ema Attends Miss Tennessee Pageant
 
5 year old Ema McLaughen's visits the Miss Tennessee Pageant as the special guest of Miss Metropolitan Darby Schumacher, a pageant contestant. 
200 Brain Surgeries Don't Stop This High School Grad
 
17-year-old Michaela Healy graduated from high school with her peers this spring, despite having over 200 surgeries to treat her hydrocephalus. 
Backstage at the Miss Tennessee Pageant
 
Watch Ema McLaughen's backstage experience at the Miss Tennessee Scholarship Pageant and her heartwarming meeting with the 2013 Miss Tennessee. 
Little Ema is a Princess for a Day 
 
WBBJ 7 Eyewitness news features Ema McLaughen and her special evening with the contestants of the Miss Tennessee Scholarship Pageant. 
EU Project Uses Computer Models to Predict the Outcome of TBI Treatments 
 
A joint initiative between eight European Union partners is using sophisticated computer models to predict treatment outcomes for TBI. 
UCSF Uses Next-Generation Sequencing of CSF to Identify Cause of Hydrocephalus  
 
Physicians at UCSF used next-generation sequencing of cerebrospinal fluid (CSF) to identify a rare cause of hydrocephalus in a 14-year old patient. 
New Zealand Researcher Hopes to Develop New Hydrocephalus Treatment 
 
An Auckland University researcher has been awarded over $1 million toward the development of a new medical device to treat hydrocephalus. 
Multi-center Study Focuses On Drug Therapy to Stabilize Bleeding after TBI 
 
A multi-center national clinical trial will determine if a drug therapy can improve outcomes for patients who have life-threatening or altering TBI. 
Advances in MRI Could Detect Molecules Associated with TBI 
 
New advances in MRI technology could safely detect molecules released after brain injury, to speed emergency diagnosis and intervention. 
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