Researchers Convene in Washington D.C. to Address a Neurological Condition Commonly Mistaken for Parkinson’s or Alzheimer’s Disease | October 14, 2024

We are excited to announce the upcoming Research Workshop on idiopathic normal pressure hydrocephalus (iNPH), hosted by the Hydrocephalus Association and the Rudi Schulte Research Institute on October 15-16. iNPH, often misdiagnosed as Parkinson’s or Alzheimer’s, affects an estimated 800,000 U.S. seniors. Experts will present cutting-edge advancements in diagnosis, including how AI and machine learning could improve early detection and treatment tracking.

World Hydrocephalus Day is September 20: Join Us in Raising Awareness and Support | September 20, 2024

Today is World Hydrocephalus Day and we’re joining forces globally to highlight the urgent need for greater awareness, research, and support for those living with this complex condition. Countries across the world are participating with us here in the United States, including Australia, Belgium, Canada, Ireland, Israel, Nigeria, Scotland, Sweden, the Netherlands, United Kingdom and Ukraine.

Danny Bonaduce Joins the Fight to Raise Global Awareness for Hydrocephalus | September 16, 2024

We are excited to present an exclusive interview with actor and TV/radio personality Danny Bonaduce, who was recently diagnosed with Normal Pressure Hydrocephalus (NPH), a type of hydrocephalus impacting around 800,000 older Americans. Danny is raising awareness about this complex condition and emphasizing the critical need for increased research and support for those affected by it.

Hydrocephalus Awareness Month Spotlights Millions
Affected by this Chronic Brain Condition | September 5, 2024

September is Hydrocephalus Awareness Month, dedicated to raising awareness and understanding of hydrocephalus. More than 1 million Americans live with hydrocephalus, a chronic neurological condition caused by an abnormal buildup of cerebrospinal fluid (CSF) in the brain. With no cure, it can only be managed through brain surgery.

Pioneering Study Aims to Prevent Hydrocephalus in Children | July 24, 2024

Hydrocephalus Association-funded researchers, Dr. Shenandoah Robinson and Dr. Lauren Jantzie of Johns Hopkins, have spent over a decade studying brain damage in infants. Their groundbreaking study tests a treatment combining melatonin and erythropoietin (EPO) to prevent brain bleeds from progressing to hydrocephalus. This approach could reduce the need for shunts and surgeries by harnessing the brain's natural healing ability.

Using AI to More Accurately Diagnose Hydrocephalus, Commonly Misdiagnosed as Parkinson's or Alzheimer's Disease | July 22, 2024

The Hydrocephalus Association is thrilled to announce an upcoming session at the HA CONNECT National Conference on Hydrocephalus, focusing on the use of artificial intelligence (AI) in diagnosing the condition. Dr. Harrison Bai from Johns Hopkins Medicine and Dr. Andrew Kobets from Albert Einstein College of Medicine will explore how AI can improve diagnostic accuracy and efficiency, especially in distinguishing normal pressure hydrocephalus (NPH) from similar conditions like Alzheimer’s and Parkinson’s.

A Forever Bond of Two Young Women United by the Loss of Siblings to Hydrocephalus | July 15, 2024

During the Independence Day weekend, Miss New York 2024 delegate Cassidy Territo took the stage with a mission that went beyond the competition, advocating for hydrocephalus awareness and accessibility. Cassidy’s platform is deeply personal as she honors her late sister, Carla, who passed away from hydrocephalus. Her connection with young Mary Marquez, who also lost her baby brother Luke to the condition, exemplifies a powerful story of resilience and mentorship.

FSU Football and NFL Player - Turned Neurosurgeon to Keynote in Tampa, FL | July 12, 2024

The Hydrocephalus Association is thrilled to announce that Dr. Myron Rolle, a former Florida State University Football standout and NFL player turned neurosurgeon, will be the keynote speaker on Saturday, July 27, at the upcoming HA CONNECT National Conference on Hydrocephalus. Now a resident of the Tampa/St. Petersburg area, Dr. Rolle has recently been appointed as the Pediatric Neurosurgery Fellow at Johns Hopkins All Children's Hospital.

Congresswoman Lori Chavez-DeRemer (OR–05) Joins Pediatric and Adult Hydrocephalus Caucus to Advocate for Affected Families | June 27, 2024

The Hydrocephalus Association proudly announces that Congresswoman Chavez-DeRemer (OR-05) has joined the Congressional Pediatric and Adult Hydrocephalus Caucus. Congresswoman Chavez-DeRemer will be the first member from Oregon to join the Caucus, championing heightened awareness, funding, and support for the hydrocephalus community in Oregon.

Innovative Drug Aims to Improve Hydrocephalus Treatment and Delay Onset of Alzheimer’s and Parkinson’s Disease | June 21, 2024

Dr. Young-Kwon Hong, Chief of Basic Science Research for the Department of Surgery at the Keck School of Medicine of USC, has unveiled a potential treatment for hydrocephalus that may also delay the onset of Alzheimer’s and Parkinson’s disease. Dr. Hong and his team have developed a drug aimed at clearing fluid and cellular debris from the brain, akin to the body's lymphatic system. Dr. Hong will be presenting his research at the HA CONNECT National Conference on Hydrocephalus July 25-27, in Tampa, FL.

A Dementia That Can Be Cured - Shedding Light on NPH | May 30, 2024

Patients with normal pressure hydrocephalus (NPH) often exhibit a triad of symptoms: gait disorder, urinary incontinence, and dementia. Despite affecting an estimated 800,000 seniors in the U.S., NPH is frequently under diagnosed or misdiagnosed as Parkinson’s, Alzheimer’s, vascular dementia, or normal aging. To address this need, we are pleased to announce our 18th Annual Conference on Hydrocephalus in Tampa, FL, July 25-27th. The conference, held in collaboration with presenting sponsors Tampa General Hospital and USF Health, will feature a dedicated 3-day track on NPH, providing attendees with valuable insights from experts in the field, as well as updates on innovative research toward improved diagnostics and treatments.

Congresswoman Yadira Caraveo (CO–08) Joins Pediatric and Adult Hydrocephalus Caucus to Advocate for Affected Families | May 23, 2024

The Hydrocephalus Association is proud to announce that Congresswoman Yadira Caraveo (CO-08) has joined the Congressional Pediatric and Adult Hydrocephalus Caucus. As the first representative from Colorado to join the Caucus and a pediatrician by profession, Congresswoman Caraveo brings invaluable expertise in addressing the unique challenges faced by pediatric patients transitioning into adult healthcare.

Researchers Convene in Cincinnati to Advance Non-Invasive Hydrocephalus Treatments | April 26, 2024

In late April, Cincinnati played host to a groundbreaking research workshop aimed at advancing non-invasive hydrocephalus treatments, continuing the momentum from the successful 2023 Research Workshop in Dallas, TX. Hosted by the Hydrocephalus Association in collaboration with Cincinnati Children's Hospital, the event brought together a diverse array of experts including scientists, clinicians, patients, and representatives from funding agencies and industry.

Congressman Bill Posey (FL–08) Joins Pediatric and Adult Hydrocephalus Caucus to Advocate for Affected Families | April 19, 2024

The Hydrocephalus Association is proud to announce that Congressman Bill Posey (FL-08) has joined the Congressional Pediatric and Adult Hydrocephalus Caucus. Congressman Posey’s role will place a strong focus on normal pressure hydrocephalus (NPH), a condition that disproportionately impacts Florida's sizable elderly population. Since NPH symptoms often resemble those of Alzheimer’s, Parkinson’s, and dementia, it is frequently overlooked or misdiagnosed, making his advocacy especially critical.

Rhode Island Representatives Unite to Join Pediatric and Adult Hydrocephalus Caucus | April 10, 2024

The Hydrocephalus Association proudly announces that Congressman Gabe Amo (RI-01) and Congressman Seth Magaziner (RI-02) have united in joining the Congressional Pediatric and Adult Hydrocephalus Caucus. Their commitment not only amplifies the voice of their constituents who have the condition but also results in heightened advocacy and representation for their needs. This will allow them to support issues that hit close to home for Rhode Island hydrocephalus patients.

Congressman Marc Veasey (TX–33) Joins Pediatric and Adult Hydrocephalus Caucus to Advocate for Affected Families | April 2, 2024

The Hydrocephalus Association proudly announces that Congressman Marc Veasey (TX-33) has joined the Congressional Pediatric and Adult Hydrocephalus Caucus. Congressman Veasey’s role will be key in advancing awareness, funding, and support for hydrocephalus patients. As a member of the Energy and Commerce Committee, he provides vital oversight on healthcare legislation impacting the community. His membership also strengthens advocacy efforts within his district and the Dallas/Fort Worth area, further amplifying the voices of those affected by the condition.

Congressman Derrick Van Orden (WI–03) Joins Pediatric and Adult Hydrocephalus Caucus to Advocate for Affected Families | March 12, 2024

The Hydrocephalus Association proudly announces that Representative Derrick Van Orden (WI-03) has joined the Congressional Pediatric and Adult Hydrocephalus Caucus. His commitment will drive increased awareness, funding, and support for hydrocephalus patients. With a 26-year Navy career, including service as a Navy SEAL Senior Chief, Van Orden brings a deep understanding of the critical care needs for veterans with traumatic brain injuries (TBIs). Notably, 14% of veterans with severe TBIs are at risk of developing hydrocephalus.

Representative Jerry Nadler (NY–12) Joins Pediatric and Adult Hydrocephalus Caucus to Advocate for Affected Families | March 6, 2024

The Hydrocephalus Association is proud to announce that Representative Jerry Nadler (NY-12) has joined the Congressional Pediatric and Adult Hydrocephalus Caucus. His involvement amplifies the voices of his constituents impacted by hydrocephalus and strengthens advocacy efforts on their behalf. His dedication to the hydrocephalus community highlights the urgent need for increased research, better treatments, and improved care for those living with this condition.

Hydrocephalus Association Plays Key Role in Rare Disease Advocacy Week | February 27, 2024

Hydrocephalus advocates from across the U.S. will join 800 fellow advocates in Washington, D.C., for Rare Disease Week on Capitol Hill, February 25–28, 2024, to champion for life-saving legislation. Hosted by the EveryLife Foundation for Rare Diseases, this annual event brings together voices to promote critical policy changes

Representative Morgan McGarvey Joins Pediatric and Adult Hydrocephalus Caucus to Advocate for Affected Families in KY-03 | February 9, 2024

The Hydrocephalus Association is excited to announce that Representative Morgan McGarvey (KY-03) has joined the Congressional Pediatric and Adult Hydrocephalus Caucus. Representative McGarvey will be a key advocate for increasing awareness, securing funding, and enhancing support for both pediatric and adult hydrocephalus patients. His dedication strengthens the voice of his constituents affected by hydrocephalus, ensuring greater advocacy and representation for their needs.

Representative Ritchie Torres Joins Pediatric and Adult Hydrocephalus Caucus to Advocate for Affected Families in NY-15 | January 4, 2024

The Hydrocephalus Association is proud to announce that Representative Ritchie Torres (NY-15) has joined the Congressional Pediatric and Adult Hydrocephalus Caucus. In this role, Representative Torres will be a vital advocate for raising awareness, securing funding, and advancing support for both pediatric and adult hydrocephalus patients. His involvement strengthens the voice of those affected by the condition and supports groundbreaking research at Columbia University.

A Magical Night of Impact

Join us in celebrating four decades of unwavering commitment, community support, and transformative impact at the Hydrocephalus Association's 40th Anniversary Gala. The evening will include a captivating performance by the extraordinarily talented Justin Willman, the creative force behind the acclaimed Netflix sensation, Magic For Humans.

Harnessing the Power of Artificial Intelligence and Machine Learning to Innovate Treatments for Hydrocephalus

The Hydrocephalus Association (HA) and the Rudi Schulte Research Institute (RSRI), hosted an impactful scientific research workshop in Dallas, TX. This included scientists, educators, engineers, neurologists, neurosurgeons, and patients who came together to explore cutting-edge advancements in non-invasive hydrocephalus treatment research.

On September 20, 2023, The World Will Come Together to Observe the Inaugural World Hydrocephalus Day

This designated annual awareness day dedicated to raising awareness about hydrocephalus and showing support for individuals living with this complex neurological condition originates in the United States and has garnered participation from numerous countries worldwide, including Australia, Canada, Great Britain, Israel, Nigeria, and Sweden.

The Hydrocephalus Association Earns a Prestigious Four-Star Rating from Charity Navigator

The Hydrocephalus Association is proud to announce that our steadfast financial stability, unwavering commitment to accountability, and transparent practices have earned us a prestigious Four-Star Rating from Charity Navigator. This esteemed designation establishes the Hydrocephalus Association as a certified 'Give with Confidence' charity, affirming that our organization effectively utilizes donations in accordance with Charity Navigator's rigorous standards.

Danny Bonaduce’s “Mystery Illness” Explained

Danny Bonaduce’s recent battle with a “mystery illness” and lack of diagnosis occurs all too frequently. Patients with normal pressure hydrocephalus (NPH) (estimated to be close to 1 million in the U.S.) present with symptoms of gait disorder, urinary incontinence, and dementia. These people are often misdiagnosed with Parkinson’s or Alzheimer’s Disease, vascular dementia, or even normal aging, due to their chronic nature and nonspecific presenting symptoms. Some NPH cases have a history of brain hemorrhage, trauma, or brain infection.  In some cases, no identifiable cause is found.

Zach Roloff Emergency Brain Surgery

A few days ago, Zach Roloff, one of the stars of the TLC reality series Little People, Big World, made headline news when he had emergency brain surgery for a shunt revision. The news stories talk about his shunt revision operation and the scariness of the ordeal. But we also need to bring awareness to Zach's condition, hydrocephalus, and the millions living with this condition every day. Hydrocephalus and a shunt can mean a lifetime of multiple brain surgeries. For each person living with hydrocephalus, dozens are common and 100 or more is not unheard of.

The Phoenix Community Rallies for Hydrocephalus | December 7, 2022

Elsa Chi Abruzzo, President and CEO of Anuncia Medical, Inc., will serve as the Honorary Corporate Chair of the 2022 Phoenix WALK to End Hydrocephalus. She will join hundreds of families and medical professionals as they rally to raise awareness and critical funds for hydrocephalus, an incurable, life-long neurological condition that affects over 1 million Americans.

Community Rallies Together in Saying “No More Brain Surgery” | October 1, 2022 

The Hydrocephalus Association invites media members to attend the Greater Cincinnati WALK to End Hydrocephalus. Saturday October 1, 2022, at T.M. Berry International Friendship Park. The Knapke family as well as other families affected by hydrocephalus will be available for interviews.

Statement by Hydrocephalus Association President and CEO Diana Gray on Washington Post Article About Chloe Kral | February 15, 2022

On behalf of the Hydrocephalus Association we want to congratulate Chloe Kral for her bravery in sharing her story with the Washington Post. Chloe suffered needlessly for years and was told by medical professionals that she had severe mental illness, only to discover much later that she had hydrocephalus. Her remarkable story highlights the need for greater awareness about hydrocephalus not only among the public, but especially among the medical community, where we know adults have a much harder time being diagnosed.

The South Carolina Community Rallies for Hydrocephalus | September 10, 2022

Olly Otter and hundreds of families and medical professionals will rally to raise awareness and critical funds for hydrocephalus, an incurable, life-long neurological condition that affects over 1 million Americans. The walk is followed by a full day of family-oriented events.
This is one of 41 WALK events held across the country that are 100 percent volunteer-led and will help raise funds that will go toward the national goal of more than $2.1 million.

The Burlington Community Rallies for Hydrocephalus With the Hydrowarrior Ride | September 6, 2022

The Hydrocephalus Association invites media members to attend the 5th annual Hydrowarrior Benefit and Charity Motorcyle Ride. Saturday, September 10, 2022. The ride starts at noon leaving the Downhome Harley Davidson and will make three local stops along the route. The first stop is Hog Wild Saloon, then Roadhouse 54, 333 Sports Bar, and ending at Lucky's Saloon where the fun will continue with an after-party. The after-party includes food, raffles, silent auction and live music with DND, The Mason Lovette Band and the Retro Band.

Welcome New Board Member Michael Siegel, Ph.D. | August 23, 2022

The Hydrocephalus Association (HA) would like to warmly welcome new board member Michael (Mike) Siegel, Ph.D. He is the Executive Director of the Pediatric Dermatology Research Alliance (PeDRA) and serves on our Scientific Advisory Board & Research Committee. He has been living with hydrocephalus since 1986 and is one of the first two Hydrocephalus Association board members to have the condition.

A Father’s Love Knows No Bounds | July 14, 2022

Media invited to the National Conference to meet the Marquez Family - The Marquez Family, and other families, will be attending the National Conference on Hydrocephalus July 14-16 at the Austin Marriott Downtown and are available for interviews. They are also available for phone interviews at any time before or after conference.

AHCRN Awarded $14 Million NINDS Grant to Study Effectiveness of Shunt Treatment for idiopathic Normal Pressure Hydrocephalus | December 7, 2021

Idiopathic Normal Pressure Hydrocephalus (iNPH) is a complex disorder of the elderly that is caused by an excess accumulation of cerebrospinal fluid in the brain and includes symptoms of dementia, difficulty walking, and impaired bladder control that affects as many as 700,000 persons in the U.S. The only treatment is for a neurosurgeon to implant a permanent internal drainage system called a shunt into the brain to drain the excess cerebrospinal fluid. However, not everyone in the medical community agrees that shunt surgery is an effective treatment for iNPH, and, as a consequence, many patients who could benefit from shunt surgery do not receive it.  Now, thanks to a $14 million National Institute of Neurological Disorders and Stroke (NINDS) grant, the largest grant ever awarded to study adult hydrocephalus, the 8 sites of the Adult Hydrocephalus Clinical Research Network (AHCRN)¹, working with 13 other health centers², hope to change that perspective with a study designed to prove conclusively whether shunt surgery for iNPH is beneficial.

Congressman Mike Levin Joins Congressional Hydrocephalus Caucus | October 21, 2021

Rep. Mike Levin (CA-49) has joined the bipartisan Congressional Pediatric and Adult Hydrocephalus Caucus. The Hydrocephalus Association applauds Rep. Levin’s support of children and adults living with hydrocephalus, a chronic neurological condition that affects over 1 million Americans.

Congresswoman Cindy Axne Joins Congressional Hydrocephalus Caucus | October 20, 2021

Rep. Cindy Axne (IA-3) has joined the bipartisan Congressional Pediatric and Adult Hydrocephalus Caucus. The Hydrocephalus Association applauds Rep. Axne’s support of families impacted by hydrocephalus. Her action reflects a welcome commitment to working with members of Congress to find practical, bipartisan solutions for the over one million Americans living with this condition.

Congressman Lloyd Doggett Recognizes September as Hydrocephalus Awareness Month | September 29, 2021

There are over 1 million Americans living with hydrocephalus, a chronic neurological condition that has no cure and can only be treated with brain surgery. To raise awareness of the condition, Congressman Lloyd Doggett (D-TX) issued a statement in the Congressional Record recognizing September as Hydrocephalus Awareness Month.

Local Mom on a Mission to Find a Cure for Son’s Brain Disorder | September 28, 2021

Chase Parker Lorenzo was just 9 months old when he was diagnosed with hydrocephalus, a life-threatening neurological condition that has no cure and can only be treated with brain surgery. Now at 14 years old, Chase has endured nine brain surgeries to treat his condition. Hoping to raise awareness and funds for research, Chase’s mom Bethann Lorenzo will take part in the Cincinnati WALK to End Hydrocephalus on Sunday, Oct. 3 at Friendship Park in Cincinnati.

Massachusetts Governor Names September Hydrocephalus Awareness Month | September 14, 2021

Every 15 minutes, a brain surgery is performed to treat hydrocephalus, a life-threatening brain disorder that affects over 1 million Americans. To raise awareness of the condition, Massachusetts Governor Charlie Baker has named September Hydrocephalus Awareness Month. The Governor signed a Hydrocephalus Awareness Month proclamation on September 1^st, at the request of Jennifer Miles and Sue Wiegers, two local moms who have children living with hydrocephalus.

Congressmen Lloyd Doggett and Chris Smith Join Forces to Raise Awareness About Hydrocephalus | April 14, 2021

Representatives Lloyd Doggett (D-TX) and Chris Smith (R-NJ) have joined forces to champion two critical Hydrocephalus Association priorities for the 117th Congress. Specifically, they’ve introduced H. Res. 20, a bipartisan resolution supporting September as Hydrocephalus Awareness Month. They also reconstituted the bipartisan Congressional Pediatric and Adult Hydrocephalus Caucus, which plays a critical role in raising awareness of the condition on Capitol Hill. Both actions reflect their deep and abiding understanding of the needs and interests of hydrocephalus patients, families, and caregivers.

Great.com Interviews Hydrocephalus Association About the Promising Search for New Treatments | March 15, 2021

Spirit Rosenberg from Great.com interviewed the Hydrocephalus Association as part of their ‘Great.com Talks With…’ podcast. This series is an antidote to negative news stories that aims to shed light on organizations and experts whose work is making a positive impact on the world.

Two Sisters, Two Brain Disorders, 36 Brain Surgeries | October 14, 2020

Sisters Stephanie (Buffa) Vogt and Sarah Buffa have the same color hair, the same love of math, and the same brain disorder. They both have hydrocephalus, a life-threatening neurological condition that can only be treated with brain surgery. Between the both of them, they have endured 36 brain surgeries to treat their condition. Hoping to raise money for research for a cure, Stephanie and Sarah will join other families from across Missouri at the Hydrocephalus Association (HA)’s St. Louis WALK to End Hydrocephalus, which is virtual this year due to the coronavirus pandemic. The Virtual WALK will take place online on Saturday, Oct. 17^th.

Congressman Josh Gottheimer Joins Congressional Pediatric and Adult Hydrocephalus Caucus | October 1, 2020

Rep. Josh Gottheimer (NJ-5) has joined the bipartisan Congressional Pediatric and Adult Hydrocephalus Caucus. The Hydrocephalus Association applauds Rep. Josh Gottheimer’s support of the over one million people living with the condition.

Local Mom Living with Brain Disorder Fights for a Cure | September 30, 2020

Imagine living your entire life with headaches and then finding out that they were due to an incurable brain disorder that can only be treated with brain surgery? That’s what happened to Lori Logan, a local mom who was diagnosed with hydrocephalus at age 46. Hydrocephalus is a life-threatening neurological condition that affects over 1 million Americans. To date, Lori has endured four brain surgeries to treat her condition and she fears it may not be her last. That’s why she helped organize the New Orleans WALK to End Hydrocephalus taking place on October 3 at Heritage Park.

Congress to Recognize September as Hydrocephalus Awareness Month | September 28, 2020

What if brain surgery was the only way to stay alive? For the over 1 million Americans living with hydrocephalus, the leading cause of brain surgery in children, it is. That’s why the U.S. House of Representatives has recognized September as Hydrocephalus Awareness Month. Hydrocephalus is a chronic neurological condition that has no cure and can only be treated with brain surgery. Many people with hydrocephalus suffer from other co-occurring conditions, particularly seniors who have Normal Pressure Hydrocephalus. This puts them at a higher risk for severe illness from COVID-19.

Baltimore Mom on a Mission to Find a Cure for Son’s Brain Disorder | September 10, 2020

Jacob Heston was just four weeks old when he was diagnosed with hydrocephalus, a life-threatening neurological condition that has no cure and can only be treated with brain surgery. Now at 4 years old, Jacob has endured six brain surgeries to treat his condition. That’s why his mom Jodi hopes to raise much-needed funds for research this Saturday Sept. 12 at the Virtual Baltimore WALK to End Hydrocephalus.

Bergen County Board of Commissioners Issues Resolution Naming September Hydrocephalus Awareness Month | September 8, 2020

Today there are over 1 million Americans living with hydrocephalus, a life-threatening neurological condition that has no cure and can only be treated with brain surgery. To raise awareness of this condition, the Bergen County Board of Commissioners adopted a resolution naming September Hydrocephalus Awareness Month. The resolution was introduced by Bergen County Commissioner Steven A. Tanelli.

Local Mom on a Mission to Find a Cure for Son’s Brain Disorder | January 23, 2020

Lucky McMahon was just one day old when he had his first brain surgery to treat his hydrocephalus, a life-threatening neurological condition that has no cure and can only be treated with brain surgery. Now, at five years old, Lucky has endured five brain surgeries and 10 other surgeries to treat other related conditions. That’s why his mom Paula McMahon is on a mission to raise awareness of his condition and raise much-needed funds for research by organizing the first WALK to End Hydrocephalus in Decatur, IL.

Congressman TJ Cox Joins Congressional Hydrocephalus Caucus | November 28, 2019

This week, Congressman TJ Cox (D-CA) announced that he has joined the bipartisan Congressional Pediatric and Adult Hydrocephalus Caucus. The Hydrocephalus Association applauds Representative Cox’s support for our community. His action reflects a welcome commitment to working with his colleagues in Congress to find practical, bipartisan solutions for the over one million Americans living with this condition.

NYC Grandmother Fights for a Cure for Leading Cause of Brain Surgery in Children | October 30, 2019

Dreame Saliyah Monplaisir was just 3 months old when she had her first brain surgery to treat her hydrocephalus, a life-threatening neurological condition that has no cure and can only be treated with brain surgery. As is often the case, Dreame’s family had no idea what hydrocephalus was or that it could mean multiple brain surgeries over the course of her life. Now, her grandmother, Tammara Tillman, is on a mission to increase awareness of the condition and raise money for a cure by taking part in the New York City WALK to End Hydrocephalus Saturday, Nov. 9 at Hudson River Park Pier 63.

Medical Experts and Patients to Educate New Jersey Families About Brain Disorder That Affects Over 1 Million Americans | October 24, 2019

Dementia, gait disturbance, and incontinence. Typically, when older adults have these symptoms, they’re told they have diseases like Alzheimer’s, Parkinson’s or a host of other illnesses, when in many cases they are suffering from a treatable condition called Normal Pressure Hydrocephalus (NPH). Join the Hydrocephalus Association at its first Hydrocephalus Education Day in Neptune, NJ on Nov. 9th, where medical experts and patients will discuss NPH symptoms, and share information about other forms of hydrocephalus.

Local Families Fight for a Cure for Little-Known Brain Disorder | September 30, 2019

Adrianna Garibaldo’s son Aiden was just 8 weeks old when he had his first brain surgery to treat his hydrocephalus, a life-threatening neurological condition that has no cure and can only be treated with brain surgery. Like many families impacted by this condition, Adrianna had no idea what hydrocephalus was or that it could mean multiple brain surgeries over the course of Aiden’s life. Hoping to increase awareness of the condition and to raise money for a cure, Adrianna is joining hundreds of local families at the Orange County WALK to End Hydrocephalus on Oct. 12 in Huntington Beach, CA.

Hydrocephalus Awareness Month Resolution Introduced in Congress | September 27, 2019

Today, Representatives Chris Smith (R-NJ) and Lloyd Doggett (D-TX) joined forces to introduce H. Res. 605, a bipartisan resolution supporting Hydrocephalus Awareness Month. As co-chairs of the Congressional Hydrocephalus Caucus, Doggett and Smith are leading efforts to raise awareness of the condition on Capitol Hill.

DC Families Unite to Find a Cure for Life-Threatening Brain Disorder | September 23, 2019

What if brain surgery was the only way to stay alive? For children like Khoy Blasi-Diggs, Jr, it is. Khoy has hydrocephalus, a life-threatening neurological condition that has no cure and can only be treated with brain surgery. Hoping to raise money for a cure, Khoy’s family will join hundreds of other DC area families at the National Capital WALK to End Hydrocephalus Saturday, Sept. 28, at the Lincoln Memorial.

Two Sons, Two Brain Disorders, 18 Brain Surgeries | September 12, 2019

Brothers Ryder and Kai Bruen not only share the same birthday, they also share the same brain disorder. The 13-year-old twins have hydrocephalus, a life-threatening neurological condition that can only be treated with brain surgery. Between the both of them, they have endured 18 brain surgeries to treat their condition. Hoping to raise money for research for a cure, Ryder, Kai, and their parents, Heather and Jason Bruen, will take part in the Houston WALK to End Hydrocephalus on Saturday, Sept. 21 at Buffalo Bayou Park.

Families Across the U.S. WALK to End Hydrocephalus | August 22, 2019

Today there are over 1 million Americans living with hydrocephalus, a life-threatening neurological condition that has no cure and can only be treated with brain surgery. In September through November, individuals and families impacted by this condition will come together at a WALK to End Hydrocephalus in 44 cities across the country to raise awareness and funds for a cure. The WALKs kick off Hydrocephalus Awareness Month, observed each year in September.

Chicago Family Walks to Find a Cure for Daughter’s Brain Disorder | August 13, 2019

When your child lives with a chronic brain condition that has no cure, life can seem daunting at times. Candace Corner and her husband Johnny Miller, whose daughter Mari June was diagnosed with hydrocephalus at three weeks old, decided to turn their fear and frustration into action. That’s why on Saturday, Aug. 17, the Corner-Miller family will participate in the Chicago WALK to End Hydrocephalus taking place at Soldier Field.

Conan O’Brien to Headline Comedy Show on April 11 to Raise Funds for Incurable Brain Condition | April 1, 2019

Emmy Award-winning comedian and host Conan O’Brien will headline “In Stitches, a Night of Laughs,” an evening of comedy and cocktails to raise awareness and funds to find a cure for hydrocephalus, a chronic brain condition that affects 1 million Americans. “In Stitches, a Night of Laughs” will take place Thursday, April 11 at 6:30 pm at the Avalon Hollywood in Los Angeles, CA.

Tampa Family Walks to Find a Cure for Son’s Incurable Brain Disorder | October 22, 2018

Jetsen Edison Davis is not even two years old but he’s already endured three brain surgeries. Jetsen has hydrocephalus, a chronic neurological condition that has no cure and can only be treated with brain surgery. His condition has meant multiple hospital stays and some frightening moments for his family. While hydrocephalus affects over 1 million Americans, there is little public knowledge about this brain disorder and not enough research dollars. That’s why the Davis family will join hundreds of local families and businesses at the Hydrocephalus Association (HA) St. Petersburg/Tampa Bay WALK to End Hydrocephalus on Saturday, Nov. 3 at Elva Rouse Park in St. Petersburg.

Columbia Families Unite to Find a Cure for the Leading Cause of Brain Surgery in Children | September 19, 2018

Wyatt Jeffrey Gable is not even a year old, but he’s already endured eight brain surgeries. The 10-month-old was born with hydrocephalus, a chronic neurological condition that has no cure and can only be treated with brain surgery. His parents, Austin and Brooke Gable, are determined to find a cure for their son’s condition, which despite affecting over 1 million Americans, gets little public attention and not enough research dollars. That’s why they’re joining hundreds of local families at the Columbia WALK to End Hydrocephalus on Sept. 29 at the Villages at Sandhill.

Congress Declares September Hydrocephalus Awareness Month | September 10, 2018

Olivia Maccoux, a college senior from Minneapolis, MN, Jennifer Bechard, a 30-year-old from Detroit, MI, and five-year-old Abagail McCall from Washington, DC all have one thing in common. Each of them has celebrated more brain surgeries than birthdays. That’s because they have hydrocephalus, a chronic brain condition that has no cure and can only be treated with brain surgery. While hydrocephalus affects over 1 million Americans, there is little public knowledge about this brain disorder and not enough research dollars. That’s why, this month 24 states and cities across the country have joined Congress in declaring September Hydrocephalus Awareness Month.

DC Family Walks to Find a Cure for Daughter’s Incurable Brain Disorder | September 6, 2018

Melissa Kopolow McCall and Matt McCall never knew the meaning of courage until their daughter Abagail was born. Despite having had 12 brain surgeries before turning five, Abagail brings joy to everyone she meets. Abagail has hydrocephalus, a chronic neurological condition that has no cure and can only be treated with brain surgery. Her condition has meant multiple hospital stays and a host of other health issues. While hydrocephalus affects over 1 million Americans, there is little public knowledge about this brain disorder and not enough research dollars. That’s why the McCall’s will join hundreds of local families and businesses at the Hydrocephalus Association (HA) National Capital WALK to End Hydrocephalus on Saturday, Sept. 15 at the Lincoln Memorial.

LA Kings, Little Women: LA Star Terra Jole, and other Celebrities Unite for 5K WALK/Run to Find a Cure for Hydrocephalus | September 5, 2018

Terra Jole, star of the hit Lifetime show, Little Women: LA and Terra’s Little Family; has one big thing in common with the LA Kings – they want to find a cure for hydrocephalus, a chronic neurological condition that has no cure and can only be treated with brain surgery. That’s why they’ll join thousands of local families at the Hydrocephalus Association Los Angeles WALK to End Hydrocephalus on Saturday Sept. 8 at Redondo Beach, CA. The WALK to End Hydrocephalus is held concurrently with the LA Kings Beach Cities 5K/10K to kick off their 2018 season and to help support the work of the Hydrocephalus Association.

Racing for a Cure! NYC Dad Builds Race Car to Help Find a Cure for Son’s Incurable Brain Disease | August 9, 2018

“Your son has a life-threatening condition and is going to need emergency brain surgery to manage it.” Those words will be forever etched into Bennett Wilson’s memory. It was the moment he was told his six-month-old son Dean had hydrocephalus, an incurable neurological condition that can only be treated with brain surgery. After learning that Dean would need multiple brain surgeries to manage his condition, Bennett decided to turn his son’s love of race cars into a hydrocephalus fundraising endeavor. So, with the help of his friends, the Brooklyn-based dad converted his family’s minivan into an endurance race car dubbed “Dean the Machine”. The car will make its debut at the 24 Hours of LeMons Race, Aug. 11-12 in Thompson, CT, and will raise awareness and funds for the Hydrocephalus Association.

Hydrocephalus Association Says #NOMOREBS, Brain Surgery Should Not Be Only Treatment Option for 1 Million Americans Living with Hydrocephalus | July 31, 2018

Imagine being 19 months old and already having had 10 brain surgeries or 21 years old and having had over 140 brain surgeries. For the over 1 million Americans living with hydrocephalus, a chronic, life-threatening condition marked by excess accumulation of cerebrospinal fluid on the brain, this is their reality because the only treatment available is brain surgery. To bring attention to the limited treatment options, the Hydrocephalus Association launched #NOMOREBS – No More Brain Surgeries – an aggressive awareness campaign that aims to raise $20 million by 2020 to accelerate research and expand education and support services for this chronic neurological condition. The campaign highlights the shocking number of brain surgeries patients must undergo during their lifetime due to hydrocephalus.

Hydrocephalus Association National Conference Offers Hope and Connections for 1 Million Americans Living with Incurable Brain Disease | June 22, 2018

More than 600 patients and families impacted by hydrocephalus, a chronic neurological condition for which there is no cure, will join leading medical professionals and researchers in Orange County, CA June 28-30 for HACONNECT, the Hydrocephalus Association’s 15th National Conference on Hydrocephalus.

New White Paper Identifies Key Areas for Future Research to Help Reduce Posthemorrhagic Hydrocephalus | March 30, 2018

A new white paper identifies important areas for research and intervention to help reduce the occurrence and effects of posthemorrhagic hydrocephalus (PHH), the most prevalent form of pediatric hydrocephalus in the United States.

Tracy Morgan Brings Comedy to L.A. for “In Stitches: A Night of Laughs” on April 27 | March 29, 2018

Actor and comedian Tracy Morgan will headline In Stitches, a Night of Laughs, an evening of comedy and cocktails to raise awareness and funds to find a cure for hydrocephalus.

A Reason for Hope this Holiday Season | November 28, 2017

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

The Vision to End a Condition that is the Leading Cause of Brain Surgery in Children | October 10, 2017

The Hydrocephalus Association’s annual Vision Dinner highlights the advances in research that aims to prevent or minimize the development of hydrocephalus after a brain bleed.

Twenty-nine Cities and States Join Congress in Declaring September Hydrocephalus Awareness Month | September 1, 2017

29 cities and states unite with local leaders of the Hydrocephalus Association to provide awareness for a brain condition with no cure that affects over 1 million Americans

Win Win Relationship for the Lookouts and Chattanoogans with Brain Condition | July 27, 2017

The Chattanooga Hydrocephalus Association Community Network and the Chattanooga Lookouts have built a winning team over the last three years, raising much needed awareness for a brain condition that has no cure.

Community Living with Brain Disorder Says NO MORE BS | July 20, 2017

The Hydrocephalus Association launches #NOMOREBS campaign to bring attention to the lack of treatment options for the one million Americans living with hydrocephalus, a neurological condition whose only treatment is brain surgery.

Star Wars Night Presented by the Hydrocephalus Association is Tomorrow at 7:15 pm | May 3, 2017

Tomorrow, May 4th, 2017, the Chattanooga Lookouts will host their annual Star Wars Night at AT&T Field, this year in partnership with the Hydrocephalus Association. Lookouts players will wear special jerseys that will be auctioned off after the event to raise funds for the Hydrocephalus Association.

Olympic Gymnast Raises Hydrocephalus Awareness | March 26, 2017

Olympic Gold Medalist Laurie Hernandez Visits Alabama Gymnastics Center at event benefiting Legacy Gymnastics and the Hydrocephalus Association.

World Birth Defects Day: Global Alliance calls for better prevention, care and research for Neural Tube Defects (NTDs) and Hydrocephalus | March 3, 2017

The PUSH! (People and Organisations United for Spina Bifida and Hydrocephalus) Global Alliance joins forces with over 70 participating organisations in promoting and increasing global awareness of birth defects, in particular neural tube defects (NTDs) and hydrocephalus.

Seattle Neurologist Honored for 18 Years of Service to Patients with Debilitating Brain Condition | October 14, 2016

Dr. Michael A. Williams received the Leadership Award by the Hydrocephalus Association to honor his career dedicated to caring for patients with hydrocephalus.

Families Unite with Scientists to Prevent Leading Cause of Brain Surgery in Children | September 28, 2016

The Hydrocephalus Association’s annual Vision Dinner will serve as the catalyst for a focused research initiative that aims to prevent or minimize the development of hydrocephalus after a brain bleed.

Hydrocephalus Mom Fights to Change Pennsylvania Truancy Law | September 23, 2016

Ashley Mantheiy, who has two sons with hydrocephalus, has worked with State politicians to introduce the Student Medical Leave Act of PA 2016

Hydrocephalus Association Converges on Capitol Hill for Rally for Medical Research Hill Day to Advocate for Increased Funding for the National Institutes of Health (NIH) | September 21, 2016

More than 300 organizations join forces to ask Congress to provide robust, sustained, and predictable budget increases for the NIH

Sixteen States Join Congress in Declaring September Hydrocephalus Awareness Month | September 1, 2016

Sixteen states unite with local leaders of the Hydrocephalus Association to provide awareness for a brain condition with no cure that affects over 1 million Americans

Chicago Neurosurgeon Announced as Medical Honoree of the Chicago Hydrocephalus Association WALK | August 24, 2016

Arthur DiPatri, MD, will be honored at the event aimed at raising awareness and critical funds for this incurable brain condition that affects more than 1 million Americans.

Seattle area-based Cider Company Partners with National Patient Advocacy Organization to Raise Awareness for Incurable Brain Condition | March 28, 2016

Locust Cider founder, Jason Spears, announces a partnership with the Hydrocephalus Association to raise much needed awareness and funds for education and research.

OpEd: Term ‘Water Head’ Causes Hydrocephalus Community to Take Notice | February 2, 2016

On January 23^rd, during the Weekend Update segment on NBC’s Saturday Night Live, Michael Che used the terms “window-licking water heads” to describe followers of Donald Trump. It caused our hydrocephalus community to take notice.

Hydrocephalus Advocate Joins Scientific Peer Review of Research Applications for the Department of Defense Peer Reviewed Medical Research Program | January 21, 2016

Peer review advocate Barrett O’Connor participated in the evaluation of research applications submitted to the PRMRP sponsored by the Department of Defense. 

Health System Takes Steps to Educate Medical Professionals on Often Misdiagnosed Brain Condition | January 13, 2016

The Greenville Health System (GHS) Neurological Institute will host a symposium on normal pressure hydrocephalus (NPH), taking bold steps forward to raise awareness and knowledge about NPH to the medical professionals serving as the first line of defense for early and proper diagnosis.