TTC Blog

National Hydrocephalus Conference 2014

13th National Conference on Hydrocephalus: Highlights

At our 13th National Conference on Hydrocephalus in Portland, OR, July 9-11, 2014, we gathered to re-establish our sense of community and educate ourselves about hydrocephalus. Take a peek at our conference highlights!

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Hydrocephalus Teens Take Charge Scholarships

Congratulations 2014 TTC Scholarship Recipients

The Hydrocephalus Association (HA) is pleased and honored to announce our 2014 Hydrocephalus Association Teens Take Charge Scholarship Recipients.

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Hydrocephalus and learning

Upcoming Webinar: Developing an Effective IEP

The next webinar hosted by the Hydrocephalus Association explores how hydrocephalus impacts learning and how to put the proper academic supports in place.

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Hydrocephalus Teens Take Charge Advisory Council Member

Starting College: Facing the Challenges & Embracing the Adventure

In her monthly Teens Take Charge blog, Madeleine Darowiche shares her experience of starting college and offers some tips for making this transition smoother.

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Hydrocephalus Teens Take Charge Blogger

Crossing the Finish Line

During WALK season and hydrocephalus awareness month, guest blogger Ariel Yong shares a lesson in teamwork learned in her most recent competition – the Spartan Race.

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NYC Hydrocephalus Education Day Featured Image

NEW Hydrocephalus Education Day

The Hydrocephalus Association in partnership with NYU Division of Pediatric Neurosurgery announce a one day Hydrocephalus Education workshop in NEW YORK!

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Hydrocephalus Awareness Month 2014

Hydrocephalus Awareness MATTERS!

September is HYDROCEPHALUS AWARENESS MONTH! To celebrate the 30 days of September, here are 30 ways you can help raise awareness. We hope we hear you raise your voice!

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Teens Transition to Adult Medical Care

The Difficulties of Transitioning to Adult Medical Care

Prior to the introduction of an effective treatment for hydrocephalus, most individuals did not survive. However, with advances in diagnosis and treatment since the 1950s, the majority of individuals with hydrocephalus are transitioning into adulthood. This transition comes with significant challenges that a recent article in the Wall Street Journal highlights.

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Hydrocephalus Association Scholarships

Congratulations to Our 2014 Scholarship Recipients!

The Hydrocephalus Association (HA) is pleased to announce the 2014 Hydrocephalus Association Scholarship Award recipients. We would like to thank everyone who applied for a scholarship and congratulate those of you who were selected this year. HA’s Scholarship program was established in 1994 to provide financial assistance to capable and promising teens, young adults and […]

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Journey with hydrocephalus

Go For Your Dreams!

In this installment of Debby Buffa’s video blog series, “Through a Mother’s Eyes: The Journey with Hydrocephalus,” she motivates a young viewer by encouraging her to go for her dreams.

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Hydrocephalus Teens Take Charge Blogger

Solving for X

Ariel Yong, guest blogger for the Hydrocephalus Association Teens Take Charge program, shares her journey with math and her ultimate accomplishment of graduating from college with a degree in mathematics.

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Dealing with Fear and Uncertainty

In this installment of the Hydrocephalus Association’s video blog series, Through a Mother’s Eye’s, Debby Buffa addresses the question of how to deal with the fear and uncertainty experienced by parents and caregivers supporting a loved one with hydrocephalus.

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Dr. Andrew Zabel Tackles Anxiety and Hydrocephalus

Dr. Andrew Zabel, Ph.D., ABPP, Kennedy Krieger Institute, returns to the Hydrocephalus Association’s 13th National Conference on Hydrocephalus to lead two sessions – the ABCs of IEPs and Anxiety, Depression and Hydrocephalus. Join us in Portland, OR, July 9-11.

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Interpersonal Connection…You Really DO Get It.

At the Hydrocephalus Association’s biennial national conference, interpersonal connection sessions allow attendees, like the Rocciola family, to meet lifelong friends who share their journey with hydrocephalus – other moms, dads, siblings, and peers.

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Lamb Derby Parade Willow Grove CA

Wyatt Parade Blog

This past May, I was able to walk in the Lamb Derby in Willows, CA. You can read the history about theparade below. My hometown is Willows, CA. The weather was perfect on the day of the parade and everyone was enthusiastic about walking for the Hydrocephalus Association (HA) and Teens Take Charge (TTC) program. […]

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Teens with Hydrocephalus

Finding a Voice

Two teens living with hydrocephalus and one sibling share their first conference experiences attending the Hydrocephalus Association’s biennial National Conference on Hydrocephalus.

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National Hydrocephalus Conference 2014

2014 Conference Update – Teen Track Highlights

Highlighting the Hydrocephalus Association’s Teen track for the upcoming 13th National Conference on Hydrocephalus, July 9-11, 2014, in Portland, OR.

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Hydrocephalus Teens Take Charge Advisory Council Member

That Moment You Realize You’re Not Alone on This Journey…

In her monthly blog, Madeleine, a Hydrocephalus Association Teens Take Charge Advisory Council member, shares her first experience meeting other teens with hydrocephalus and how it changed her whole outlook on life.

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Transitioning from Pediatric-centered Care to Adult-centered Care for Young Adults with Hydrocephalus

In this installment of the Hydrocephalus Association’s video blog series, “Through a Mother’s Eye’s,” Debby Buffa addresses the question of how to make the transition from a pediatric neurosurgeon to an adult medical team to manage on-going care for hydrocephalus.

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Congratulations 2013-2014 Brian Christopher Newcomer Reaching for Racquets Tennis Scholarship Recipients!

The Hydrocephalus Association is so pleased to announce the 2013-2014 Brian Christopher Newcomer Reaching for Racquets Tennis Scholarship Recipients!

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Hydrocephalus Teens Take Charge Advisory Council Member

Give A Little of YOURSELF…Volunteer!

In her monthly blog for the Hydrocephalus Association Teens Take Charge program, Madeleine celebrates National Volunteer Month with ideas for giving a little time…for a big impact.

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Hydrocephalus Teens Take Charge Blogger

Never Give Up

Ariel Yong, Hydrocephalus Association Teens Take Charge blogger, follows up on the topic of our recent video blog by Debby Buffa about kids with hydrocephalus playing sports by talking about the lessons she learned as an athlete.

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Hydrocephalus Teens Take Charge Blogger

Our Own Little Mermaid…But Does She SING?

Meet Ariel Yong. She joins Madeleine Darowiche and Henry Guion as a guest blogger for our teen and young adult hydrocephalus community!

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Young Adults at Hydrocephalus Association Conference

Countdown to Conference: Conference’s Biggest Take-Aways

Haylea Blank shares the take-aways from attending two Hydrocephalus Association national conferences that have helped her manage her hydrocephalus into adulthood.

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Hydrocephalus Association Teens Take Charge Guest Blogger

Breaking the ICE

We have a NEW guest blogger for the Hydrocephalus Association Teens Take Charge program. Meet Henry and join the conversation on Twitter. Use #TeensTC.

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Hydrocephalus Queen

Hydro Queen

Karly Rodriguez wrote this powerful and honest poem one month prior to her ETV procedure, after being diagnosed with hydrocephalus in 2012.

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Hydrocephalus Teens Take Charge Advisory Council Member

I Challenge You to be Random!

In her monthly blog for the Hydrocephalus Association Teens Take Charge program, Madeleine Darowiche challenges all of us to practice random acts of kindness throughout the year.

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13th National Conference on Hydrocephalus: Community. Clarity. Cure.

The Hydrocephalus Association patient-centered National Conference empowers all of us with the tools and connections to address the medical, educational and social complexities of living with hydrocephalus. Join us in Portland, Oregon, July 9-11, 2014!

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Practice Random Acts of Kindness

The Hydrocephalus Association challenges you to practice random acts of kindness leading up to Valentine’s Day! Let’s have some fun!

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Countdown to Conference: How Conference Changed One Teen’s Life…

The Hydrocephalus Association 13th National Conference on Hydrocephalus will be July 9-11, 2014, in Portland, OR. Madeliene Darowiche from our Teens Take Charge Advisory Council shares why it’s a MUST ATTEND EVENT for members of the hydrocephalus community. We hope to see you there!

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Now Accepting Applications for 2014 Hydrocephalus Scholarships!

The Hydrocephalus Association is now accepting applications for our 2014 Scholarship Program. The scholarship program was established in 1994 to provide financial assistance to capable and promising teens and young adults who have been dealing with the ongoing challenges and complexities of hydrocephalus. Happy 20 year anniversary to our scholarship program!

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Looking Back…Moving Forward: Facing the Future with Fierce Determination and Optimism

As the Hydrocephalus Association continues it’s 30th anniversary commemoration, Elijah Lawrence shares his college essay, a reflection the values and gifts he lives every day of his life. Elijah is a Teens Take Charge Advisory Council member and an active member of the hydrocephalus community.

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Looking Back…Moving Forward: Mentoring the Future Voice of Hydrocephalus

Jennifer Bechard Johnson, the Hydrocephalus Association’s Teens Take Charge mentor and Education and Support Manager, shares her views on growing up with hydrocephalus and mentoring the future voice of hydrocephalus through her work with the teen and young adult community.

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Study Seeking Participants on the Clinical, Anatomic and Genetic features of Pediatric Hydrocephalus

Researchers at Seattle Children’s Hospital seek to enroll participants in a study on the clinical, anatomic and genetic features of hydrocephalus.

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NO to Bullying!

Hydrocephalus Association Teens Take Charge Advisory Council member, Madeleine Darowiche, uses Bullying Prevention Month to talk about managing bullies in school.

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Looking Back…Moving Forward: Spina Bifida and Hydrocephalus Do Not Define Me

October is Spina Bifida Awareness Month. Nicole Small reflects on living with both spina bifida and hydrocephalus since birth, as the Hydrocephalus Association continues our interview series commemorating our 30th anniversary.

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The Art of Getting Covered

This article was written for individuals newly entering the healthcare system, particularly our growing group of young adults who will be transitioning from their parents’ insurance.  By Kaitlyn Petronglo As a young adult you may be unfamiliar with the way the health insurance system works, especially in light of the new changes that will go into […]

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To Share or Not to Share Your Condition on a First Date?

Hydrocephalus Association Teens Take Charge guest blogger Holly Senatore talks about the thrill of the first date and whether or not to bring up living with hydrocephalus.

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The Pen is Mightier Than the Sword

Hydrocephalus Association Teens Take Charge Advisory Council member, Madeleine Darowiche, challenges us to raise awareness through our local media this Hydrocephalus Awareness Month 2013.

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Congratulations 2013 TTC Scholarship Recipients!

Congratulations to our 2013 Hydrocephalus Association Teens Take Charge (TTC) Scholarship Recipients! Our TTC scholarship program is made possible through the generous support of the Medtronic Foundation.

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