Kashawn recently shared his story with his peers in our Teens Take Charge blog.

Click this link to read the full article.

School, parents, homework, sports, relationships and friendships are only a few things that can cause extra stress in a teenager’s life. Adolescent years can be a stressful time period for anyone, but when you add a chronic condition like hydrocephalus to the mix it can further complicate everyday life for teenagers and young adults.

Too much stress in one’s life can affect a person physically and emotionally, so it is extremely important to find out what your stressors are, to seek help and discover different coping mechanisms.

Recently, TTC’s Advisory Council Member, Wyatt Barris, asked our Facebook fans the following question:

“Being a teen or young adult with hydrocephalus can be stressful. What are some things that you do to help you cope with it?”

Below, Teens Take Charge (TTC) Member, Haylea Blank and TTC Advisory Council Member, Wyatt Barris, share their personal experiences, tips and advice.

Haylea Blank:

What is something you do to take your mind off of hydrocephalus?

I am currently 22 years old and have undergone 21 surgeries related to hydrocephalus. I have had to endure fourteen surgeries including the ventriculoperitoneal (VP) shunt I had placed, one external ventricular drain (EVD) with an Endoscopic Third Ventriculostomy (ETV), one surgery to remove my VP shunt, three ETV revisions, a 4th ventriculostomy, and a 4th craniotomy with fenestration. The last procedure I had was on August 4, 2008.

I also have Dandy-Walker Syndrome which affects my 4th ventricle and causes issues with the 3rd ventricle. When I have headaches I sometimes listen to music, either some of my favorite country music or soft piano music. I never knew that piano music could be so soothing. I also like to watch my favorite movie Dirty-Dancing with Patrick Swayze and Jennifer Grey. If I have an extremely bad headache that feels like my brain is in a soup can (an analogy I say to my Neurosurgeon) then I like a cool, dark room and LOVE to sleep. It usually helps and the headache goes away after a few hours.

Hydrocephalus is a part of my life and it ALWAYS will be, but I do not let that stop me from achieving my dreams and working at a job I love to the fullest.  I pray I don’t have any other issues in the future more serious than random headaches, but if I do I am very glad to know I am NEVER ALONE in this FIGHT.

“Remember that you were given this life because you’re STRONG enough to live it.” ~Unknown

Wyatt Barris:

Stress about grades, sports, and many other things, is doubled when you live with the ongoing challenges of hydrocephalus. The constant migraines and being absent from school can take a major toll on your grades and school work, which brings added stress. The way I deal with stress is by listening to music or writing in my journal, but these are just a few things in a wide range of stress relieving activities. You can ride bikes, run, or just step back and breath.

Life is stressful but we have the power to make life happy and fun. We cannot let any stress, whether it is related to hydrocephalus or not, hold us down.

Helpful Resources:

•  Stress Management
• Tips and Techniques for Dealing with Stress
• Teen Health (Stress)
• American Academy of Child & Adolescent Psychiatry: Helping Teenagers With Stress
• Palo Alto Medical Foundation: What Stresses Teens Out?
• Fact Sheet: College and Hydrocephalus
• Fact Sheet: Headaches and Hydrocephalus
• Transition Guide

While we strive to keep costs down for attendees and provide some financial aid for registration, there are other costs to consider, such as airfare and accommodations. Because of the chronic nature of hydrocephalus, many of us struggle to make ends meet. So we have put together a tip sheet to give you ideas on identifying sources that might provide financial assistance.

CLUBS/ASSOCIATIONS:
It often pays to solicit professional or charitable organizations. Consider non-specific organizations such as the Elks, Kiwanis and Rotary clubs; regional groups, like the Native Sons of the Golden West; and historical, veteran or recreational associations, such as the Daughters of the American Revolution, the Veterans of Foreign Wars and the YMCA. These large organizations often promote raising money for worthy causes, including those involving chronic illness.

Here is a list of clubs and organizations to get you started. Keep in mind that these usually have a local chapter, and it’s best to deal with them at that level.

www.kiwanis.org
www.elks.org
www.lionsclub.org
www.mooseintl.org
www.rotary.org
www.nsgw.org

REGIONAL CENTERS
Regional Centers are also a great resource for parents. These are state-run organizations set up to assist parents with children who are at-risk developmentally. As the conference is geared to providing information for these children, Regional Centers are another potential source of financial assistance.

LOCAL FAMILY RESOURCE CENTERS AND NONPROFITS FOR MEDICAL CONDITIONS
There are many conditions that are concomitant, related or causal to hydrocephalus. Consider approaching a nonprofit related to this other condition to see if it provides funding to promote better education or quality of life.

TREATMENT CLINICS
Some clinics provide grants to further the education of patients with chronic conditions.

CREATE YOUR OWN OPPORTUNITY
Create an event and invite friends, family and people from your community. Let them know what the funds raised will be used for, why it’s important and how much their contribution is appreciated.
Perhaps a community group, like the local chapter of the Boy Scouts, would be willing to assist.

FINANCIAL AID:
Limited financial aid is available to members of the Hydrocephalus Association to cover conference registration fees. Financial aid is awarded based on need. Fill in the financial aid application form and email it to us at info@hydroassoc.org by May 20, 2012.

To find out more about the Conference and to register, click here.

Capt. Mark Kelly, USN-Ret.

Captain Kelly’s biographical information generously provided by Keppler Speakers

I am so excited about this news I just had to make it the subject of my blog this month – Captain Mark Kelly will be speaking at our hydrocephalus conference in June!

Mark Kelly is an American astronaut, retired US Navy Captain, best-selling author, prostate cancer survivor, and an experienced naval aviator who flew combat missions during the Gulf War. The winner of many awards, including the Legion of Merit, two Defense Superior Service Medals and two Distinguished Flying Crosses, Kelly was selected as an astronaut in 1996. He flew his first of four missions in 2001 aboard Space Shuttle Endeavour, the same space shuttle that he commanded on its final flight in May 2011. He has also commanded Space Shuttle Discovery and is one of only two individuals who have visited the International Space Station on four different occasions.

Already a celebrated American, Kelly became the center of international attention after the January 2011 assassination attempt on his wife, former US Congresswoman Gabrielle Giffords. In their best-selling memoir, Gabby, the couple shares their story of hope and resilience with the world. The inspirational memoir has topped multiple best-seller lists, including the New York Times, the Wall Street Journal, USA Today, and Amazon. Kelly and Giffords have captivated the nation with their story, appearing in an exclusive Diane Sawyer interview, and on Nightline and The Daily Show, among others, and have appeared on the covers of People and USA Today. Named on the Esquire’s 2011 “Americans of the Year,” Kelly was also featured on the cover of and profiled in the magazine. Kelly is currently working on a children’s book titled Mousetronaut: A Partially True Story, which is expected to be released in October 2012.

Mark Kelly

Kelly’s identical twin brother, Scott, is also an astronaut who served as commander of both the Space Shuttle and the International Space Station. They share the distinction of being the only siblings who have traveled in space.

With 6,000 flight hours in more than 50 different aircraft, 375 aircraft carrier landings, 39 combat missions and more than 50 days in space, Astronaut Mark Kelly is one of our country’s most experienced pilots.

A sought-after keynote speaker, Mark Kelly is an American hero who inspires others to be their best while remaining true to their core values. He exemplifies leadership, the importance of teamwork, and courage under pressure.

We are so pleased to have such a high-caliber speaker as Captain Kelly presenting his stirring and inspirational perspectives on how to face challenges. He is scheduled to be our Keynote Speaker during lunch on Friday, June 29th, at the 12th National Conference on Hydrocephalus.

If you haven’t already made plans to attend, we hope you will do so now – Captain Kelly is someone you will not want to miss! Click here for additional information about the conference, Astronaut Mark Kelly, and how to register.

I would like to thank two very special members of our community for their help in arranging Captain Kelly’s appearance – John Lawrence and Deborah Phillips. This magnificent addition to our program would never have been possible if it were not for the two of them.

I look forward to seeing you all in Bethesda come June!

The purpose of this conference is to provide an update on the latest innovations and findings going on in hydrocephalus research, and to strategize about the next great breakthroughs. Scheduled for July 9 – 11 in Seattle, Washington, this conference boasts a speaker line-up of some of the world’s most renowned scientists and researchers who have been studying aspects of hydrocephalus, such as:

The Causes of Hydrocephalus

• The latest work being done around genetics – how hydrocephalus can cause genetic changes, as well as possibilities for intervening and managing genetic defects;
• Expanding our understanding of injury mechanisms (pathogenesis and neuro-modulation) – to better understand how to minimize the damage done by hydrocephalus, as well as find the cause.

The Enhancements in Diagnosis

• What biomarkers are telling us;
• What are the latest techniques in neuroimaging;
• How close are we to pharmacological interventions?

The Treatment Advances

• Where the biggest advances in bioengineering are likely to happen to prevent the need for shunt revisions;
• How better surgical approaches apply to specific types of hydrocephalus.

The Outcome Improvements

• Improvements in neuropsychology outcomes;
• Neurological outcomes and quality of life.

Those invited to present at the conference include, Marc DelBigio, MD, PhD, FRCPC (Professor, Department of Pathology & Canada Research Chair in Developmental Neuropathology, University of Manitoba); Norman Relkin, PhD, MD (Director of the Cornell Memory Disorders Program & Associate Professor of Clinical Neurology and Neuroscience, NewYork-Presbyterian Hospital/Weill Cornell Medical College); Benjamin C. Warf, MD (Director, Neonatal and Congenital Anomaly Neurosurgery, Children’s Hospital Boston); Abhaya Kulkarni, MD, MSc, PhD, FRCSC (Dept. of Neurology, Hospital for Sick Children & Associate Professor, Neurosurgery, University of Toronto); Marion L. (“Jack”) Walker, M.D. (Division of Pediatric Neurosurgery, Primary Children’s Medical Center, Salt Lake City); and Michael A. Williams, M.D. (Medical Director, LifeBridge Health Brain & Spine Institute, Baltimore).

The Hydrocephalus Association is partnering with the Seattle Children’s Hospital Research Foundation, the University of Washington, the University of Utah Division of Pediatric Neurosurgery, the Hydrocephalus Clinical Research Network, and the Hydrocephalus Research Guild in putting on this conference.

Sponsorship opportunities are available and registration information may be found here.

At the 2012 Veteran WALK Chair’s meeting Hydrocephalus Association introduced its new School WALK program.  The program was the brainchild of Long Island WALK Co-Chair, Mia Padron.   The event Mia coordinated last fall raised over $4,000 with 114 kids participating in their own “mini-WALK” after school.  Most importantly, all of the school’s 4th graders learned all about hydrocephalus through educational sessions. A shunt manufacturer’s representative accompanied Mia for the education portions of the program, bringing visual aids to share with the class – a shunt model, brain anatomy models, etc. Then Mia’s son, Tyler, answered his classmates’ questions about his condition and treatment.

There are certain criteria to conduct an HA School WALK.  First, you need a child with hydrocephalus in elementary school who is willing to share his/her condition with his/her classmates. (If your child doesn’t like anyone to know about his / her hydrocephalus this program is NOT a good fit.)  Second, the parent of the child with hydrocephalus also needs to be willing to speak to students and to teach them about hydrocephalus.  If possible, asking a representative from one of the shunt manufacturing companies to accompany the parent for the education part of the program (providing shunt models, brain models, etc.) can be very helpful.

A School WALK is obviously a much smaller event than the typical HA WALK.  It can be planned and completed in approximately 6 weeks. School WALK Kits are available for parents interested in starting and Chairing a School WALK in their community.  If you would like more information about starting a School WALK or if you would like a School WALK Kit mailed to you please contact HA’s National Director of Special Events, Randi Corey, at (919) 518-8283.  Mia Padron, the volunteer who started the first School WALK in Long Island is also willing to answer questions and provide additional information.  Mia can be contacted at (631) 255-4756 or at Padron117@aol.com.  We hope that the School WALK Program is one that spreads throughout the U.S. Not only will it raise additional money for HA programs and research, but it will also help educate a whole generation about hydrocephalus, and that is definitely a “win-win!”

To see the article from the local news outlet and read about the award event, please click here.

To read more, please click this link.

By John Kestle, MD, MSc, FRCSC, FACS

(re-posted with the author’s permission)

The HCRN has successfully launched a new, potentially ground-breaking study across the Network. This study, titled Ventricular Involvement in Neuropsychological Outcomes in Pediatric Hydrocephalus, or VINOH for short, is funded by a Mentored Young Investigator award from the Hydrocephalus Association received by Dr. Jay Riva-Cambrin at Primary Children’s Medical Center in Salt Lake City, Utah. This study is looking into the short term implications hydrocephalus may have for school-aged patients concerning school performance, cognitive functioning, and social well-being. In addition, this study will be addressing the very important question of if and to what extent ventricle size impacts both, neuropsychological and clinical outcomes. Another exciting aspect of the VINOH study is the collaboration it has initiated across all HCRN Centers between the neurosurgical and neuropsychological staff, who are instrumental in the VINOH Study’s success. It is hoped that the collaboration begun between the care providers from these two different departments may continue in the future and serve to further improve outcomes for hydrocephalus patients. Congratulations to the Primary Children’s Team in getting this study going for the Network and hydrocephalus patients!

The HA would like to congratulate Dr. Riva-Cambrin for taking on this challenging study which we hope will prove impactful to our community and help move us towards that day when we will finally “Eliminate the Challenges of Hydrocephalus”.  Read about the HA’s Research Initiative and our Mentored Young Investigators program as well as our latest grants for CSF Production, Flow, and Regulation.