Awareness

A Reason for Hope this Holiday Season

Local Lucas, Kansas, performer sings to raise awareness for her son living with hydrocephalus, a chronic brain condition that has no cure.

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Middle School Science Fair Features Hydrocephalus Booth

Raising awareness about the issue is the first step in finding treatment and prevention of hydrocephalus.

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NPH

Like Father, Like Son: An NPH Journey

One man watched his father decline into a state of confusion until diagnosed with Normal Pressure Hydrocephalus. Then he found himself traveling the same road.

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So Many Reasons To Be Grateful

Olivia Maccoux shares her story and leads this year’s holiday drive to support the critical research work of the Hydrocephalus Association.

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What Can’t You Live Without?

Read Genesis Espaillat first-person account of life with hydrocephalus, which she wrote in honor of September being Hydrocephalus Awareness month.

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Motorcross for Hydrocephalus

The Race is on to Promote Hydrocephalus Awareness

Motocross Star is spreading awareness about hydrocephalus, one race at a time.

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Hydrocephalus Awareness Month Challenge

Turn the Country Hydrocephalus BLUE!

Our Hydrocephalus Awareness Month challenge? Let’s turn this country #hydrocephalus BLUE! Here’s how…

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Madeleine, Hydrocephalus Association Teens Take Charge blogger

The First Year of College: An Honest Look at My Experience

Teens Take Charge Mentor Task Force Member, Madeleine Darowiche, shares the highlights and challenges of her first year away from home at college.

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Teen with money

Money, Money, Money – Helping Out Without Emptying Wallets

TTC Member Megan Rivkin challenges young people to get involved in advocating and fundraising to increase research efforts and public awareness of hydrocephalus.

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Emily Fudge and Pip Marks, Hydrocephalus Association

Moms on a Mission: The Trailblazers

It is only fitting that we close out our Mother’s Day celebration with the mothers that started it all. Our Trailblazers – Emily Fudge, Cynthia Solomon, Pip Marks.

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BLUE at the DC Hydrocephalus Association WALK

Moms on a Mission: April Christian, Champion

Our mom and (S)HEro #6 April Christian continues our Mother’s Day profiles of 7 moms on a mission within our #hydrocephalus community.

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Moms on a Mission: Jennifer Pope, Power Forward 

Our mom and (S)HEro #5 Jennifer Pope continues our Mother’s Day profiles of 7 moms on a mission within our #hydrocephalus community.

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Moms on a MISSION: Chara McLaughen, Promoter

Tireless organizer and promoter describe Mom #4 – Chara McLaughen. Our Mother’s Day profiles of 7 (S)HEroes of our #hydrocephalus community continues.

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Randy and Jan Kell

Moms on a MISSION: Jan Kell, Connector

Bringing people together. That’s Mom #3 – Jan Kell, The Connector. Our profiles of 7 (S)HEroes of our #hydrocephalus community continues. Happy Mother’s Day!

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Susan Fiorella, hydrocephalus advocate, with her son.

Moms on a MISSION: Susan Fiorella, Advocate

Mom #2 – Susan Fiorella, The Advocate. Join us as we profile 7 (S)HEroes of our #hydrocephalus community – MOMS ON A MISSION! Happy Mother’s Day!

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Craig and Vicki Brown and family

Moms on a MISSION: Vicki Brown, Visionary

One week of celebrating our MOMS ON A MISSION! Mom #1 – Vicki Brown, The Visionary. Happy Mother’s Day!

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Jerome Kersey with Dawn Mancuso, Hydrocephalus Association CEO

A Sad Farewell to a Friend of our Community: Jerome Kersey

It is with deep sadness that we share the news of the passing of retired NBA player Jerome Kersey, a keynote speaker at our 2014 Hydrocephalus Conference.

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Brian Osborne of The Bachelorette Will WALK in Hershey for the Hydrocephalus Association

Brian Osborne, a Season 10 contestant on The Bachelorette, will participate in the 2014 Central PA Hydrocephalus Association WALK in Hershey, PA. He will be participating in support of his life-long naighbor, Matt Kocsis, who has hydrocephalus.

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Long Island School WALK Kicks of Hydrocephalus WALK Season

The LIHerald.com features the upcoming Hydrocephalus Association Kids to Cure Hydrocephalus WALK which will take place on April 11, 2014, at the Jennie E. Hewitt School in New York. Andrea Moore, chair of the WALK, organized the event with the school, which her son, Teddy, attends.

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A Gift of Advocacy: Support Your Voice in Washington

The Hydrocephalus Association’s advocacy strategy spans a broad range of activities from local, grassroots awareness efforts such as our WALK program, to state level efforts to establish hydrocephalus awareness days/months, to our federal efforts which focus on research programs at the National Institutes of Health (NIH) and legislation with Congress. Our primary advocacy goal is […]

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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.

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What Do We Want? A CURE! When Do We Want It? NOW!

September is not the only month to raise awareness about hydrocephalus. Join us in celebrating the launch of our Advocacy Toolkit, a resource to communicate with elected officials and the media.

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Tennessee Mom Calls for Research Funding of Hydrocephalus

Chara McLaughen raises awareness and calls for increased funding for research into hydrocephalus.

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Tracy Taback’s Journey with Hydrocephalus Highlighted by Newington Life

Tracy Taback shares her story about being diagnosed with hydrocephalus. Since her ETV, she has become a Support Group Leader in Connecticut and an avid spokesperson to raise awareness of hydrocephalus.

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Mark and Mary Break from Biking to Join the Houston WALK

Mark Paulissen and Mary Sodano take a break from their cross-country “Spirit of America Ride for Hydrocephalus” bike ride to join the inaugural Houston Hydrocephalus WALK.

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Voices from Our Community: Joyce Schwartz Spreads Her Message about Normal Pressure Hydrocephalus

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. Her son, Tyler, who is now 10, was born with hydrocephalus but not diagnosed until he was 23 months old. Those 23 months were […]

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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.

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

Ryan Riley has been 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 and has been involved with the Easter Seals since he was a baby.

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Voices from Our Community: Joyce Schwartz Spreads Her Message about Normal Pressure Hydrocephalus

Joyce Schwartz shares her 23 year journey of searching for a diagnosis and then treatment for Normal Pressure Hydrocephalus (HA).

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Raising Awareness…From Coast to Coast!

Strength. Perseverance. Endurance. Spirit. Do these traits sound familiar? Of course, these are all words that describe individuals touched by hydrocephalus. These words also describe Mark Paulissen and Mary Sodano. Their spirit of adventure and love for bicycling has spurred them onto a journey of a lifetime. Sponsored by Celsius drink company, Mark and Mary have challenged […]

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Voices from our Community: Madeleine Speaks Up About Hydrocephalus

By: Madeleine Daraowiche Hi, my name is Madeleine. I am 17 years old and will be a junior in high school. I have had hydrocephalus since before I was born. I was diagnosed in utero, and had my first shunt placed when I was 15 days old. Since then, I have had six shunt revisions. […]

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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 scheduled for October 6th. To read the full article, click here.

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2500 Mile Bike Ride will Benefit the Hydrocephalus Association

Mark Paulissen and Mary Sodano  are preparing to embark on a 2500 mile bike ride journey ride for a cause near to their hearts, hydrocephalus. To read the full article, click here.

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Voices from Our Community: Milton Newman Shares His Story of Normal Pressure Hydrocephalus

Fog is Lifted After 15 Years of Confusion and Misdiagnosis 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), a treatable neurological disorder in which excess fluid […]

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Back To School Time!

It’s that time of the year – back to school time! Most kids around the country will have returned to school this past Tuesday, September 4th, if they have not already. This can be an exciting yet stressful time for parents and kids alike. While kids may be worried about facing the academic rigors of […]

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Voices from Our Community: Abby Shares Her Life Experiences With Hydrocephalus!

By: Abby Wood Hi!  My name is Abby.  I turned 12 years old at the end of August and this is a snapshot of my life.  I was born in Albuquerque, New Mexico. When I was born, I was very sluggish and tired. My parents found out that I had hydrocephalus a few weeks later […]

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

The Smyrna-Clayton Sun-Times highlights the upcoming Delaware Hydrocephalus WALK which will take place on September 22, 2012 at Smyrna High School. To read the full article, click here.

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September is Hydrocephalus Awareness Month! Here’s What You Can Do…

by Jennifer Bechard, Support Group Liaison This September, the Hydrocephalus Association (HA) invites you to celebrate and honor the estimated one million Americans touched by hydrocephalus. As a community, we can do this by raising awareness about hydrocephalus either in our own circles or to the larger networks of which we are a part. This […]

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CT News Channel WTNH Spotlights the Upcoming Middlebury WALK

Connecticut News Channel WTNH spotlights the upcoming Middlebury WALK that will take place on October 6, 2012 at Meadowview Park. To read the full article, click here.

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Famous Gospel Singer and Wife Create Their Family Through Adoption and Devotion

  The Adrian Daily Telegram shares the story of the national recognition Jerry Garcia and his wife Sarah have received by adopting children with medical conditions and special needs. To read the full article, click here.  

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