HA Blog |

Finding Our Way with L1CAM

August 20, 2015

The causes of hydrocephalus are varied, but one with a clear genetic linkage is X-linked hydrocephalus, a genetic disorder that occurs in about 1 of 30,000 births.

Research 101: Junction, Junction, What’s Your Function?

August 13, 2015

By understanding why and how these disruptions occur, scientists may be able to repair or replace abnormal junctions and prevent or arrest the development of hydrocephalus.

Navigating Social Interactions Growing Up with Hydrocephalus

August 12, 2015

In Dan’s new blog, he talks about growing up with a chronic medical condition and navigating social interactions with his school peers.

Scientific Networks are Changing the Research Landscape

July 15, 2015

Together, the HA-funded HCRN, AHCRN, and HANDS are changing how hydrocephalus research is conducted and accelerating research progress.

Research 101: The Importance of Sample Size

June 25, 2015

Having a large number of participants reduces the risk of accidently having extreme, or biased, groups. Let’s find out why.

The Patient Voice in Hydrocephalus Research Studies

June 4, 2015

Our Patient Partner Committees provide the patient perspective throughout the duration of a research study, making sure the patient voice is at the table.

Research 101: Randomization

May 28, 2015

Our Research Blog 101 series continues with a look at how randomization works in clinical trials.

Realizing I Had Hydrocephalus

May 26, 2015

Dan Kricke talks about the first time he realized he had hydrocephalus when he was 5 and the various emotions he had along the way to adulthood.

Mixed Emotions: Nerves

May 20, 2015

Jamie Wright, Houston Community Network leader, went to Haiti with a pediatric neurosurgery team from Children’s Memorial Hermann Hospital. This is her experience.

Moms on a Mission: The Trailblazers

May 14, 2015

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.

Moms on a Mission: April Christian, Champion

May 13, 2015

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

Moms on a Mission: Jennifer Pope, Power Forward

May 12, 2015

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

Moms on a MISSION: Chara McLaughen, Promoter

May 11, 2015

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

Moms on a MISSION: Jan Kell, Connector

May 10, 2015

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!

Moms on a MISSION: Susan Fiorella, Advocate

May 9, 2015

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!

Moms on a MISSION: Vicki Brown, Visionary

May 8, 2015

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

Learning to Date Me

May 6, 2015

Bryant, our new guest blogger, shares openly about the unconditional support of his fiancee and resilience of their relationship as he lives with hydrocephalus.

Telling My Story

April 28, 2015

Meet Dan, a new guest blogger lending his voice to our adult hydrocephalus community. We are excited for Dan to share different aspects of his journey each month.

HCRN Researcher Dr. Jay Wellons Demonstrates Importance of Multi-Center Studies

March 26, 2015

How do surgeons make decisions? How do they stand by those decisions and evaluate themselves? The HCRN set out to answer these questions in their study.