Under Pressure
Together We Can Transform Lives
Under Pressure, our new national research campaign, will drive the development of non-invasive and/or one-time therapies, improve the screening and diagnosis of hydrocephalus, and improve access to care and quality of life for patients.
We have come a long way since the beginning of our journey to dramatically increase the scope of hydrocephalus research in 2009. We find ourselves at a critical juncture – with so many innovative, new ideas and potential for therapies, devices and ultimately a cure. We must execute a bold plan now to find the support needed to keep this life-changing or impactful research moving forward and bringing these new ideas to market.
Pam and Jamie Crouthamel
HA Supporters
“The trusted people engaged with the Hydrocephalus Association have been with us through all our ups and downs as this condition affects our daughter which in turn affects our family. Over a million people in the U.S. alone have hydrocephalus and yet many people have never heard of hydrocephalus. More research needs to be done to learn about this condition, eliminate an overabundance of surgeries, and find a cure. We all know that surgery is not a cure for hydrocephalus.”
Campaign Leadership
The Hydrocephalus Association is honored to have two strong leaders, Dr. Michael G. Muhonen and Raymond R. Moser, serving as co-chairs for Under Pressure. They are both members of the HA Board of Directors, with a depth of knowledge in their fields of expertise. As board members, they have also been involved in shaping our strategic direction.
Raymond R. Moser, Jr., Esq.
Chief Executive Officer, Moser Enterprises, St. Petersburg, FL
“As a businessman and the father of a resilient adult daughter who has lived with hydrocephalus since she was one month old, I am proud to co-chair the research campaign. I know that supporting HA and its comprehensive research strategy is the best investment that I can make and I encourage others to do the same.”
Michael G. Muhonen, MD
Director of the Neuroscience Institute, Children’s Hospital of Orange County
“I have seen my share of patients who have had to endure multiple brain surgeries and the many other challenges that come with a hydrocephalus diagnosis. They deserve more options, and HA is poised to seek out new and varied therapies to address these issues through critical research. I confidently recommend supporting this research campaign to help improve the lives of those who live with hydrocephalus, and to ultimately find a cure.”
Pressure Points
Recent years have brought unbelievable pressure on humankind. When it comes to hydrocephalus, the word “pressure” reaches a whole new level for our community.
The pressure on the brain, caused by the accumulation of cerebrospinal fluid.
The responsibility that families feel to properly care for their loved ones who live with the daily challenges that come with the condition.
The burden that patients with hydrocephalus do not want to place on the people in their lives.
The gravity of what living with hydrocephalus means in a person’s life.
Critical Research Opportunities
We listened closely to the needs of our community over the last two years by conducting a study that included patients, family members, scientists, and physicians. The result is our Top 20 Community Research Priorities. These have been condensed into five focus areas, or “buckets,” where HA is best poised for high impact. These are found below, with examples for each.
The gravity of what living with hydrocephalus means in a person’s life.
- Fund discovery and preclinical research in treatments.
- Support device and drug studies currently moving toward clinical trials. This will eventually help move the product into the market to begin treating patients.
Reduce the burden of current treatments
- Fund discovery and preclinical research in treatments.
- Support device and drug studies currently moving toward clinical trials. This will eventually help move the product into the market to begin treating patients.
Improve the screening and diagnosis of hydrocephalus
- Support research on the causes and processes that lead to hydrocephalus.
- Spread awareness to improve screening and referrals for NPH which is too often mis-diagnosed or under-diagnosed.
Improve quality of life (QOL)
- Support studies that focus on quality of life including psychological, emotional, and cognitive outcomes.
- Collaborate with psychologists, neurologists, psychiatrists, headache specialists, rehabilitation/PT experts, and motor control experts.
Improve access to care
- Fund research that studies or streamlines access to care.
- Conduct a study on health economics and access to care.
Help Us Relieve This Pressure!
Over the last 13 years, HA has injected $13.8M in grant money to scientists. In turn, these scientists have invested this initial funding into their research to help them secure $71M in additional federal grants through the National Institutes of Health (NIH), the Department of Defense (DOD) and other foundations. HA’s initial investment into research has multiplied.
Our awardees would not have secured these grants without the initial investment from HA, made possible by our supporters.
There are many ways that HA supporters can choose to help:
- Unrestricted outright gift in any amount
- Unrestricted multi-year pledge (minimum $25,000 over a term of up to 5 years.)
- Personalized gift (minimum investment $50,000 outright or pledged.)
-
- Designation to one of the four cornerstones of HA’s research programs.
- Innovator Award (minimum investment $50,000.)
- Designation to one of the five Community Research Priority Areas.
Please help accelerate our research trajectory by supporting the Under Pressure Campaign today. For more information, contact Linda Riley at linda@hydroassoc.org.