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2014 Conference Update – NPH Track Highlights
By Jennifer Bechard Johnson, Education Manager There is something for everyone at our 13th National Conference on Hydrocephalus. We are happy to announce that this year’s conference will have a special track of programming dedicated to meeting the needs of the normal pressure hydrocephalus (NPH) population. Here is a preview of what our conference has to […]
Voices from Our Community: Dr. Harold Conn’s Decade of NPH Misdiagnosis
The Hydrocephalus Association is commemorating the 50th anniversary of the recognition of normal pressure hydrocephalus (NPH) as a distinct medical syndrome through the journeys of members of our hydrocephalus community on the road to proper diagnosis and treatment of this life-altering condition.
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.
PA Boy Wins Elks Child of the Year
Young Renfrew boy living with spina bifida, hydrocephalus, and other conditions, is named the 2014 to 2015 Child of the Year from the PA Elks.
AARP Bulletin Features Normal Pressure Hydrocephalus
The April 2014 issue of the AARP Bulletin featured an article that highlights normal pressure hydrocephalus as a condition that mimics dementia, helping raise awareness about an often undiagnosed or misdiagnosed treatable neurological condition that affects up to 700,000 persons in the United States alone.
Wireless Shunt Monitor Being Tested in Manchester, England
The BBC reports that Royal Manchester Children’s Hospital has implanted a new wireless system in two children with hydrocephalus that checks to make sure the shunt is working properly. The system transmits data to a box that the children carry around with them.
Conference is only 3 short months away!
Join us in Portland, Oregon, July 9-11, 2014, for our 13th National Conference on Hydrocephalus hosted by the Hydrocephalus Association.
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.
HCRN PI’s offer point and counterpoint of shunting and ETV/CPC
Counterbalancing articles in AANS Neurosurgeon about changes in the treatment of hydrocephalus and the impact of new procedures going forward make for interesting reading about the evolution of hydrocephalus treatment.
Bringing Normal Pressure Hydrocephalus Out of Obscurity
In the 1960s, a treatable form of dementia was a controversial claim. One man questioned things that others were simply content to accept, and to bring it into the real world as a clinically diagnosable and, more importantly a treatable syndrome known as Normal Pressure Hydrocephalus. Who was Dr. Salomon Hakim?
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.
Upcoming Research Webinar: Delivering on a Promise
Join the Hydrocephalus Association on Monday, March 3, 2014, at 7:00 p.m. EST for our next webinar, “Research Update: Delivering on a Promise,” exploring the latest advances in hydrocephalus research and showcasing several exciting studies being conducted to better understand the basic science of hydrocephalus and clinical protocols for treating patients.
New Sensor Works with Shunt to Monitor Brain Pressure
Researchers at the Fraunhofer Institute for Microelectronic Circuits and Systems IMS in Duisburg, Germany, working jointly with Christoph Miethke GmbH and Aesculap AG, engineered a cerebral pressure sensor that is implanted with a shunt that allows physicians to read brain pressure using a hand-held meter.
An ETV Gives Young Adult New Lease on Life
Meredith Vitrano acquired hydrocephalus as a pre-teen. The now 24 year-old has been shunt free for 2 years after Dr. Edward Ahn of Johns Hopkins Children’s Center performed an endoscopic third ventriculostomy.
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!
A Better Way Forward
A special holiday message from the Hydrocephalus Association Chairwoman of the Board of Directors.
Spreading Holiday Cheer
Stephanie Oltean has a son with hydrocephalus. Her community of Lucas, Kansas, came out to celebrate the holiday season and learn more about hydrocephalus at a benefit concert to support The Reason for Hope campaign and the work of the Hydrocephalus Association.
Looking Back…Moving Forward: A Most Precious Gift
As the Hydrocephalus Association wraps up its interview series commemorating our 30th anniversary, we sit down with Russell Fudge, a founding member of the association and its longest serving board member. Russell closes our interview series looking back at our rich history and giving the association a message for the future.
Research UPDATE: HCRN Semi-Annual Investigator Meeting Summary
Summary of the Hydrocephalus Clinical Research Network (HCRN) investigators and coordinators’ Fall meeting, November 7- 8, in Salt Lake City.
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.
Portland: Here We Come! 2014 Hydrocephalus Conference
SAVE THE DATE: The 13th National Conference on Hydrocephalus will take place in Portland, Oregon, on July 9-11, 2014! Our patient-centered conferences empower all of us to understand, seek out and put into place the care, programs and services that will meet our needs now and well into the future.
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.
Hydrocephalus Getting the Attention It Deserves
For all of the health and financial burdens hydrocephalus places on individuals and society, far too little is being invested in research, especially when compared to diseases with similar burdens like cystic fibrosis and Parkinson’s disease. That’s why, in 2009, the Hydrocephalus Association expanded our mission to include funding hydrocephalus research. We launched a Research Initiative to stimulate the research ecosystem, improve outcomes and quality of life, and study the root causes of the disease, with an ultimate mission of finding a prevention or cure.
Personifying Determination: Gabby Giffords
Former Congresswoman Gabrielle Giffords, who acquired hydrocephalus after the tragic incident which took place in 2011, shares a personal message to they hydrocephalus community.
Looking Back…Moving Forward: Building Bridges Between Pediatric and Adult Hydrocephalus
As the Hydrocephalus Association continues our 30th year anniversary commemoration, Dr. Marion “Jack” Walker, pediatric neurosurgeon, Primary Children’s Medical Center, Salt Lake City, Utah, reflects on his 37 years of service to the hydrocephalus community.
Are we looking for innovation or revolution?
In her monthly blog, Hydrocephalus Association CEO Dawn Mancuso explores how a simple paradigm shift in thinking presented at a recent conference at Children’s Hospital of Alabama, might cause a revolutionary change in the rate of progress for research around hydrocephalus.
Looking Back…Moving Forward: Advancing the Research Mission
As the Hydrocephalus Association continues it’s 30th anniversary commemoration, David Browdy, Board Member and Chair of the Research Committee, reminisces about the history of the association and shares a vision for the future.
What if it isn’t Alzheimer’s or Parkinson’s? Understanding Normal Pressure Hydrocephalus
The Hydrocephalus Association’s first webinar on Normal Pressure Hydrocephalus is now available online! “What if it isn’t Alzheimer’s or Parkinson’s?” held on Tuesday, September 10, 2013, with Dr. Michael A Williams, Medical Director, Sandra and Malcolm Berman Brain & Spine Institute, LifeBridge Health at Sinai Hospital of Baltimore, discussed how the diagnosis of Normal Pressure Hydrocephalus can be missed and how it can be made.
WA Trick or Treat for Hydrocephalus Featured in Local Paper
The Reflector Extra features the story of the Matheis family, who’s son, Griffin, was born with hydrocephalus. The family is spearheading a Trick or Treat for Hydrocephalus event in their local area.
Chattanooga WALK Chair Interviewed on NBC-Affiliate WRCB
Chara McLaughlen and her daughter Ema, who has hydrocephalus, help educate the Chattanooga area about the condition Ema lives with every day.
Little Logan Takes His Crew to Wichita
10 month-old Logan Whitaker’s team, Logan’s Pit Crew, is featured on Pittsburgh, Kansas’ CBS-affiliate KOAM. The 30 person team of family and friends will participate in the Hydrocephalus Association WALK in Wichita, Kansas, on october 19, 2013.
Houston Widow Wins Medical Malpractice Suit
The widow of 46 year-old Lance Windrum won a multi-million dollar medical malpractice suit against a Houston based physician at North Cypress Medical Center. Windrum had a diagnosis of hydrocephalus that was rejected by the treating physician.
Wanted: Partners in the Journey
Hydrocephalus Association CEO Dawn Mancuso shares her excitement and gratitude for a special event held for the Hydrocephalus Association in New York City on October 10, 2013, that moves the association mission closer to raising greater awareness of hydrocephalus and, ultimately, finding a cure.
Fresno WALK Featured in the Hanford Sentinel
The Hanford Sentinel features the Fresno WALK and a local family who will take part in the activities on Sunday, October 13, 2013 at Woodward Park. The Landis Family is walking to support young Emma, diagnosed with hydrocephalus at 3 months old.
Happening NOW: First Annual Vision Dinner in New York City
The Hydrocephalus Association’s First Annual Vision Dinner, “A Time for Awareness; The Hope for a Cure,” unites politicians, neurosurgeons, scientists, advocates, and business leaders to raise the public profile of hydrocephalus and to share the current research initiatives and successes around the condition.
Minnesota High School Senior Raises Money for Hydrocephalus Research
The Minnesota Press & News shares the story of Park Center High School senior Olivia Maccoux, who is raising awareness and funds for her annual Hydrocephalus Association (HA) WALK. Olivia is an active member of the HA community and an advocate for hydrocephalus awareness.
SCSunTimes Highlights Smyrna WALK
The SCSunTimes profiles the second annual Hydrocephalus Association Smyrna WALK for Hydrocephalus at Smyrna High School, Smyrna, Delaware, on September 21, 2013. The WALK was inspired by resident, George Wicks, who has hydrocephalus.
Dallas Community Support Leader Featured in Local Newspaper
Megan Redfearn, Hydrocephalus Association Community Support leader in Dallas, Texas, shares her journey with daughter, Emma, who has hydrocephalus, with The Cross Timbers Gazette.