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

 

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

of hydrocephalus'  

 

Upcoming Events 

 

9/21 - Smyrna, DE WALK

 

9/21 - Columbia, SC WALK

 

9/21 - Houston WALK

 

9/21 - Lagos, Nigeria Festus Fajemilo Foundation Support Group Meeting 

 

9/22 - Greater New England WALK

 

9/22 - Long Island WALK

 

9/26 - Houston, TX Community Support Network Meeting 

 

9/28 - Nashville, TN Community Meet and Greet 

 

9/28 - Louisville, KY WALK

 

9/28 - Greater Charlotte, NC WALK

 

9/29 - Los Angeles WALK

 

9/29 - Washington, DC 5K Run/WALK

 

10/2 - Salt Lake City, UT Community Meet and Greet 

 

10/6 - Inaugural New Jersey WALK 

 

10/8 - Seattle, WA Community Support Network Meeting 

 

10/9 - Buffalo, NY Community Meet and Greet

 

10/13 - Portland, OR and Vancouver, WA Community Meet and Greet

 

10/13 - Fresno, CA WALK

 

10/19 - San Francisco, CA WALK

 

10/19 - Wichita, KS WALK

 

10/19 - Graham, NC WALK

 

10/19 - Albuquerque, NM WALK 

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

 

Just a couple of weeks ago, the Institute of Medicine (IOM) released the proceedings of a public workshop they held in February of this year entitled, "Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement." CEO Dawn Mancuso shares the goals and the recommendations of the workshop in her monthly blog. 

 

Read More 

Wedding Bells at HA!
 
CONGRATULATIONS to our very own, Jennifer Bechard Johnson, and her husband, Andrew Johnson, on their wedding! Jennifer is our Support Group Liaison and Teens Take Charge Mentor. Many of you have received her words of strength, support, and advice when you have called our office. Diagnosed at age 10 with hydrocephalus, and having endured 100 brain surgeries, her passion to spread awareness and support others living with the condition is inspirational. Please join us in wishing her and Andrew the best on their journey together! 
You can be walking down the street and pass someone with hydrocephalus, and never even know it. That's how it has been for Olivia Maccoux. Olivia was born with hydrocephalus, but many of her classmates and members of her community would not know she has had over 90 surgeries since birth. Our intern, Taryn Garn, sits down with Olivia to talk about how, through her experience with hydrocephalus, she feels she has been given the opportunity to grow and help others who are struggling with the challenges of living with this condition.  
 
 
As we continue our interview series in commemoration of our 30th anniversary, we sit down with Ann Marie Flannery, MD, a Pediatric Neurosurgeon who works at the Cardinal Glennon Children's Medical Center of Saint Louis University in Missouri and a member of our Medical Advisory Board. She looks back on her involvement with the Hydrocephalus Association (HA) and its contribution to the medical community as well as speaks openly about the concerns young adults express about transitioning to adult neurological and neurosurgical care.
 
 
As we continue our 30th anniversary interview series, we sit down with Roxana Ramos, the Hydrocephalus Association's (HA) support group leader in South Florida. Roxana's brother, Jorge Corvo, was diagnosed with hydrocephalus at 6 months of age due to complications at birth. He is forty-seven years old and has undergone multiple shunt replacements throughout his life, with the last one changing his shunt to a programmable valve. Roxana sits down with Jennifer Bechard, our Support Group Liaison, and shares her motivations for leading a support group.
 
 
As we continue our interview series, we sit down with one of the longest standing members of our association and a member of our Board of Directors, Debby Buffa. Debby has three adult children. Her two oldest daughters, Sarah and Stephanie, both have hydrocephalus. Debby has worked with hydrocephalus families since 1987 when she began a support group in St. Louis. Debby sits down with Amanda Garzon, our Communications and Marketing Manager, and shares her journey with her two daughters, her view on the evolution of HA, and her message to parents and individuals whose lives are touched by hydrocephalus.

 
As we continue our interview series commemorating our 30th anniversary, Kaitlyn Petronglo sits down with former Hydrocephalus Association (HA) Board of Directors member and lifelong hydrocephalus advocate Mark Geiger. Mark was diagnosed with hydrocephalus as a child and has undergone five shunt surgeries over his lifetime. He has made raising awareness and funding for hydrocephalus his life's work, dedicating his time professionally as well as running marathons recreationally to raise awareness and support for the cause.

Research Update

This research blog series is dedicated to highlighting the current studies of the Hydrocephalus Clinical Research Network (HCRN). We continue with a discussion with Tamara Simon, MD, MSPH, an Assistant Professor of Pediatrics and a Pediatric Hospitalist at Children's Hospital of Seattle. She is the principal investigator for the shunt infection section of the HCRN Registry.

 

Read More

Support and Education Update
 

This September, the Hydrocephalus Association (HA) invites you to celebrate and honor the many faces of hydrocephalus, and to unite with us to create one strong voice of awareness. Hydrocephalus Awareness Month is a time that individuals and like-minded organizations can unite in our mission to eliminate the challenges of hydrocephalus. As a community, we can do this by raising awareness about hydrocephalus in both our own circles and to the larger networks of which we are a part. This month is also a great time for us to challenge ourselves to find new ways to get involved in raising awareness through education and advocacy activities. Read about the 30 ways YOU can make an impact this month!

 

The Hydrocephalus Association's (HA) program, Teens Take Charge (TTC), trains teenagers and young adults (and their siblings) who are affected by hydrocephalus to become self-advocates with both their health professionals and with their legislators. Through a generous grant from the Medtronic Foundation, the Hydrocephalus Association is able to award five scholarships in the amount of $1,000 each to these remarkable young adults. We commend these young adults for their academic achievements, extracurricular activities and perseverance. They are an inspiration to everyone at the Hydrocephalus Association and to our entire community!
 
 

By Marvin Sussman, PhD, HA Board Member

 

The first commercially-available shunt was introduced almost 60 years ago. Over the past 60 years, significant developments and evolution of medical device technology has occurred in many fields of medicine. This article compares and contrasts the evolutionary changes that have occurred in the field of hydrocephalus with the revolutionary changes that have occurred in two other fields: cardiac pacing and radiation oncology. What we find is that while the shunt has seen modifications that have had positive impacts for patients, more is needed if we are going to move the management and, one day, the cure of hydrocephalus into the 21st century. 

 

It's that time of year - back to school time! Whether you are in middle school, high school, or college, starting a new school year can be stressful and even nerve-wracking. In her monthly blog, Madeleine Darowiche, Teens Take Charge (TTC) Advisory Council member, talks about the importance of having a strong support system in your corner.
 
 

Short Nose Only Rescue Team (SNORT), is a New Jersey-based all-volunteer rescue for brachycephalic dogs, including breeds like French and English bulldogs, Boston terriers and pugs. SNORT has taken Anise, a hydrocephalic puppy, into its care. Nina is an HA member and also a SNORT volunteer. She wanted to share Anise's story with our community. 

 

Development Update
 

Thanks to you, HA has become the nation's largest and most widely respected health advocacy organization devoted to meeting the needs of those affected by hydrocephalus. We would never have become the force we are today without the unyielding commitment of our members. If you have not done so, please take a moment right now to renew your commitment and make your annual membership gift to the Hydrocephalus Association. It will truly take every member to move HA's agenda forward. A donation of any amount will be used to support our community family and fight this condition together. Thank you for your commitment. 

 

The Hydrocephalus Association has qualified for inclusion in the Combined Federal Campaign, the federal government's workplace giving program. If you are a federal employee you can designate your contribution to the Hydrocephalus Association (HA) with code #10066.
 
Advocacy and Awareness Update

 

There was no better way to kick off Hydrocephalus Awareness Month than with gratitude to the recent awareness being raised about hydrocephalus with some of today's brightest stars. These individuals include Justin Timberlake, Taylor Swift, Alison Sweeney, Dr. Lauren Streicher, Kasey Kahne, and Dick Wagner. Support from highly visible celebrities and athletes not only motivates hydrocephalus patients to continue their fight, but also brings greater exposure and more understanding about this life-altering condition to the general public.

 

Read More

 
The Hydrocephalus Association (HA) announces a new awareness building and fundraising initiative...It's Trick or Treat for HA! This fun idea was brought to HA by Orange County, California, volunteer Heather Kluter. After piloting the project last year, Heather worked with Randi Corey, HA's Director of Special Events, to formalize a program for volunteers that includes instructions and resources to get started. If you are interested in learning more about this awareness building and fundraising initiative, or are interested in taking a leadership role, please contact Randi Corey at randi@hydroassoc.org
First Teen-chaired WALK is a BIG Success!
 
Dylan Johnson became our first teen WALK Chair after leading the successful Anoka Hydro River WALK in Minnesota. Dylan is in his senior year at Legacy Christian Academy in Andover, Minnesota. With the support of family and friends, he planned and organized the Anoka Hydro River WALK, a one-mile walk to raise awareness and support for funding research to help end hydrocephalus. He received two great pieces in the local press. More importantly, he had an incredible day and hopes to chair the event again next year. 
Chicago-area Reporter Raises Awareness for Hydrocephalus and the Chicago WALK
 
The Hydrocephalus Association would like to thank Chicago-based reporter Matthew Schwerha for the series of stories he shared around the Chicago WALK, which took place on August 18, 2013 at Soldier's Field. These interviews with WALK participants ran in local newspaper affiliates of Chicago Sun-Times.com. Below are links to each of these moving stories.  
Join Our 2013 HA WALKS on Twitter!
 
Do you use Twitter? If so, many of our WALKS will be tweeting on event day. Follow the fun! 

Participating WALKS will have a twitter account using the following naming convention: @HAWALK_location name. Search for and follow your local WALK. 

On event day, join in by tweeting! When you tweet, use the hashtags #HAWALK and #hydrocephalus. Don't forget to tag your local WALK and @HydroAssoc in your tweets so we can retweet. Tweet photos! 

Join these WALKS on Twitter: Atlanta, Anoka, Chicago, Denver, Detroit, FresnoLos Angeles, and Minneapolis
 
Hydrocephalus in the News - Raising Awareness

 

Megan Redfearn, our HA Community Support leader in Dallas, Texas, shares her journey with daughter, Emma, who has hydrocephalus, with The Cross Timbers Gazette.

 

In response to President Obama's call to create a National Research Action Plan, the Departments of Defense (DOD) and Veterans Affairs (VA) have allocated $107 million to advance the diagnosis and treatment of post-traumatic stress disorder (PTSD) and traumatic brain injury (TBI) in U.S. veterans.

 

Digital Journal features Alexis "Lexi" Rocciola, Teens Take Charge Advisory Council member, who recently attended a meet and greet with Taylor Swift before her August 27, 2013, concert in Sacramento. Alexis won the tickets from her local radio station, Froggy 92.9.

 

A new study of former athletes with chronic traumatic encephalopathy (CTE) hopes to find ways to detect early stages of the condition and, thereby, early diagnosis for treatment interventions prior to significant symptom onset. The study is being conducted by Robert Stern of Boston University's Center for the Study of Traumatic Encephalopathy and will partner with researchers at Brigham and Women's Hospital to interview former football players and non-contact athletes.

 

Summer Minchew, our Charlotte, NC WALK Chair and support group leader, shares her moving personal experience of her son's diagnosis and treatment for hydrocephalus, and proudly announces the inaugural WALK for Charlotte in The Charlotte Observer's MomsCharlotte.com.

 

Phoenix-based CBS Channel 5 shares the story of Fran Rutledge, who was originally diagnosed with Alzheimer's but, after a fall that broke her back, it was discovered she had Normal Pressure Hydrocephalus (NPH).

 

Woodlands Online features the upcoming Hydrocephalus Association Houston WALK. This in-depth piece highlights two personal stories and raises awareness to the need to raise funds for research into better treatment options and, ultimately, a cure for hydrocephalus.

 

The Rio Rancho Observer interviews our New Mexico WALK Chair, Kathy Carillo, about the upcoming WALK and a smaller fundraising dinner she is organizing to galvanize her team. The Black and White Gala Dinner, to be held on August 24th, will have Sonja McCully, a librarian at Rio Rancho Public Schools, as the keynote speaker. McCully was misdiagnosed with Alzheimer's, then eventually correctly diagnosed with normal pressure hydrocephalus.

 

PRWeb highlights the upcoming National Capital 5K Run/WALK for Hydrocephalus to benefit the Hydrocephalus Association. More than 600 local runners and walkers are anticipated to participate in the 3rd annual event. 

 

Trisha Miller of A-shirt Fitness held an Aqua Zumba party to benefit Allie Degrood's WALK team, which took place on September 15. Many participants had never met Allie, yet came to support TEAM A.
This email was sent to amanda@hydroassoc.org by blog@hydroassoc.org |  
Hydrocephalus Association | 4340 East West Highway, Suite 905 | Bethesda | MD | 20814