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Hydrocephalus Association

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Nonprofit Overview

Causes: Brain Disorders, Brain Disorders Research, Health

Mission: The mission of the Hydrocephalus Association is to find a cure for hydrocephalus and improve the lives of those impacted by the condition. We will accomplish this by collaborating with patients, caregivers, researchers and industry, raising awareness, and funding innovative, high-impact research to prevent, treat and ultimately cure hydrocephalus.

Results: HA has made significant progress in research. Its $9 million research investment has resulted in more than $32 million in hydrocephalus research grants by the National Institutes of Health and the Dept. of Defense. HA also funds the works of the Hydrocephalus Clinical Research Network and the Adults Hydrocephalus Clinical Research Network, working to find better treatment options and improved quality of life for those living with hydrocephalus. Additionally, HA has developed the first-ever hydrocephalus patient registry (HAPPIER) - the HA Patient-Powered Interactive Engagement Registry to accelerate hydrocephalus research. The Patient Registry is an online database created for the hydrocephalus community to share their experience living with hydrocephalus, giving researchers access to important data. Data that can lead to discoveries in underlying causes of the condition, intervention strategies for preventing the condition, improvements in diagnosis, and/or alternative treatments. HAPPIER also helps HA develop programs and resources to support patients and families with living daily with hydrocephalus. HA has also developed the HydrocephalusCONNECT Peer Support --Teams of HA Volunteers and staff answer the hydrocephalus community's questions and listen to their concerns either via phone call or email. The Peer Support is a one-stop for support, information and connection.

Target demographics: Anyone living with the challenges of hydrocephalus -- pediatric, adult or Normal Pressure Hydrocephalus (NPH.)

Direct beneficiaries per year: Millions of Americans affected by hydrocephalus, a life threatening, life changing condition.

Geographic areas served: The U.S. and most foreign countries

Programs: HA's program services include: *A resource for newly diagnosed families needing accurate information, education and support. *One-on-one support services for newly diagnosed families or families facing new challenges *HA funds 44 support groups across the U.S. *Public education materials -- HA has written, edited, revised and published more than 30 hydrocephalus related education pieces (brochures, fact sheets, booklets, etc.) provided free of charge to patients, schools, families, etc. *Annual scholarships for those with hydrocephalus pursuing higher education *A biennial conference for families where they can connect with other families and obtain the most current information on hydrocephalus, hydrocephalus treatments and advice on how to best live with hydrocephalus Research -- Since HA began funding research in 2009 it has invested over $9 million in the most promising research available, making it the largest non-profit, non-governmental funder of hydrocephalus research in the U.S. More importantly, HA funded scientists have been able to use the initial, modest funding from HA to accumulate the data required to apply for, and receive, larger federally funded grants. HA's $9 million investment has resulted in an additional $32 million in hydrocephalus research.

Community Stories

46 Stories from Volunteers, Donors & Supporters

Toni T.1

Volunteer

Rating: 5

I was diagnosed with Hydrocephalus when I was five weeks old, shunted at six weeks old. Before I was 10 I would endure 14 revisions, most recent revision was 2010. I am now doing well, the Hydrocephalus Association has been a great support network for me.

Client Served

Rating: 5

when I was 10 years old, I was told that I no longer had Hydrocephalus. For the next 13 years I experienced many difficulties, but because I was told I no longer had Hydrocephalus, no one attributed my difficulties to my illness. When I was 23, I had my first revision. Over the past 19 years I have had 11 revisions. My first revision, I found the HA and attended my first conference in SF. It was a very humbling experience to be in a room full of people who have what I have. Up until that time I had never met anyone with my illness. My latest revision was December 2018. I had and ETV. The support that I received from my local chapter was very important to me. Being involved with the HA led me to return to graduate school and become a medical social worker so I can work with patients who have Hydrocephalus.

1 Jessie M.1

General Member of the Public

Rating: 5

Hi my name is Jessie monks I am 25 years old I have had hydrocephalus my whole life but that never stops me I got it when I was a premature baby at 24 weeks my worst year was when I was in 10th grade I had a total of 13 surgeries through my whole life I have had a total of 23 surgeries

Amy S.8

Volunteer

Rating: 5

I was born with hydrocephalus in 1977. Growing up I only knew one other person with hydrocephalus. I had my 12th and 13th brain surgeries in 2010 - 2011. At this time a close friend went online to learn more about hydrocephalus and she is the one who introduced me to the Hydrocephalus Association. I thank her to this day. I started to volunteer / attend events in 2011. At these events I have met many wonderful people. Hearing there stories and the various challenges they have been through have made me feel more normal. I appreciate the fact I can be in a room when I am not the only person with a shunt. Not the only person who has ever had multiple brain surgeries. The people I have met have inspired me and I hope I can do the same for someone else out there.

Volunteer

Rating: 5

We were blessed to find the Hydrocephalus Association 7 years ago. My Granddaughter was diagnosed at 9 months and we felt helpless and knew nothing about the condition. HA not only has given us education and support but also a way for us to get involved and have a hand in making improvements to all those who suffer from hydrocephalus.

1 Jenifer A.

Volunteer

Rating: 5

I am a volunteer for The Hydrocephalus Association and I cannot begin to tell you how amazing they are. I started working with them 9 years ago. I run the Connecticut Walk that is held each and every year. The families that are brought together with one common goal, to find a cure for Hydrocephalus. The support when needed. You name it! Truly one amazing organization!

Previous Stories
1

Volunteer

Rating: 5

I cannot begin to say enough about the Hydrocephalus Association! When I became involved with the association I was truly blessed to meet amazing individuals! Being the identical twin of a profoundly disabled woman due to hydrocephalus the association has provide me and my family so much support! Alexandrea, my twin has had 224 brain surgeries to date. The work that this organization does it truly amazing! The amazing volunteers and staff work day in and day to fund research for a much needed cute and to provide support for local families. I have never felt so blessed to have the support that I have with the Hydrocephalus Association and my family is truly is truly blessed as well! They are truly a fantastic group! Finally the organization has allowed me the opportunity to run the Connecticut Hydrocephakus Association Walk and assist in helping to raise funds and awareness for hydrocephalus and hydrocephalus research in Connectcut! It has also allowed me to bring together other families who have loved ones who suffer daily from this condition as well as helping everyone to raise awareness for this condition! HA is a godsend and I hope others continue to reach out to them for support as well!

1 Zachariah S.

Client Served

Rating: 5

I was born with hydrocephalus in 1978. I have relied on a shunt to live my life. In my late twenties I went through a very tumultuous time with my condition. That's when I first reached out to the Hydrocephalus Association around 2009. They have become such an important and vital piece of my life today. With both the research they have helped to facilitate, the communities they've created, and the other patient connections they've helped me forge with other patients, I don't know what I would do without the help of the Hydrocephalus Association.

Shirley O.1

Client Served

Rating: 5

IAM a veteran of Vietnam and gulf words but was blinded by NPH 15 months ago . Enen being a nurse for 50 years I knew nothing about this condition.I found the association and Trish when I was mentally able and it has been a life saver. You always get good answers to the many questions people have. Is hard to believe that so little is known about it. Most doctors won't answer your questions. Thank God for Ha.

Volunteer

Rating: 5

After my health deteriorating for nearly five years and having an endoscopic third ventriculostomy (ETV) to treat my Hydrocephalus, I was having a lot of trouble re-acclimating to the world. My neurosurgeon suggested I reach out to The Hydrocephalus Association to connect with other people who live with the same condition. What a blessing it has been to be part of the Association. From just making connections and emailing or calling other hydro warriors to participating in community network events, walks to raise awareness and national conferences,The Hydrocephalus Association has been a life line for me.

1

Client Served

Rating: 5

1986, I was a healthy 55-year-old "rocket scientist, an aerospace-engineering department manager of one of the world's leading aerospace engineering companies, an engineering professor at a major UC campus, a textbook author, an inventor with around 100 patents … and I began clumsily falling on my marathon-training runs, loosing motor coordination, couldn't write coherently, speak intelligibly, my mentation began failing, memory failed to find names, words, facts, my ability to analyze became hopelessly muddled … and I abruptly found myself unemployed. "Early retirement," they called it. I went from doctor to doctor, hospital to hospital including the VA, neurologist to neurologist. I was misdiagnosed for 20 years. I was pronounced as suffering from old age, Alzheimer's or Parkinson's diseases, MS, ALS, and every dementia known. Maybe it's nothing, just a form of hysteria. Malingering! That's it. Trying to qualify for some disability benefit! We know your kind.

Adult-onset hydrocephalus had first been identified in 1964. My symptoms appeared a scant 21 years after the disease was first discovered. Small wonder I couldn't find help.

Eventually I stumbled across an article on line that alerted me to a neurosurgeon at UCLA. He was on the medical advisory board of the Hydrocephalus Association (HA). I was examined, diagnosed, shunted, regained myself, met HA, it's members, programs, and have been a staunch supporter ever since. It's members have formed a magnificent mutual-aid society. For the million hydrocephalus victims in the US, this is the only organization that addresses the needs of all hydro patients. Education, research, patient-support groups for all ages. Nothing else comes close. The annual meeting has become a high point in my year.

I now am an active, healthy 88-year-old HA volunteer, give lectures, peer counselor, community organizer, and lead a full life. My wife and I just returned from the Caribbean, outrunning Hurricane Dorian.

1

Volunteer

Rating: 5

I found out about the Hydrocephalus Association (HA) while in my darkest days having hydrocephalus, a condition I was born with. At age 22 I was struggling with side affects from a surgery and no answers as to why this was happening. I needed someone who understood what I was going through because I felt so alone with my symptoms. As I was searching for a peer support group, I came across the Hydrocephalus Association website and the wealth of information they offer to patients and families with hydrocephalus. I was so hopeful when I came across their community network section and saw that there were groups across the US who meet in person to talk about life with hydrocephalus. While I was bummed that there was not one in my area, I emailed the wonderful staff at HA who helped me to get one started. It has been 5 years since that time and even though I was born with this condition, I have learned so much about my condition from the people I have met through HA. I am thankful every day for the joy and abundance HA has brought into my life! I have found my true calling in life because of HA.

1

General Member of the Public

Rating: 5

I wish I had known of this Organization years ago. Because of this Organization, I have learned so much about this condition . My husband is the patient and I am the caregiver. It is such a comfort to go to these wonderful people and share our stories. I am so thankful for this Group !

3 trishbogucki

Volunteer

Rating: 5

After I was diagnosed with NPH and had my shunt implanted, I wanted to know more about hydrocephalus so I asked my doctor for a good source of information. He pointed me to the Hydrocephalus Association website, and that has changed my life for the better almost as much as my shunt has!
I started out writing posts about my NPH experiences for the HA blog and then was encouraged to become a peer support volunteer for HA and talk with other NPH patients and their family members. I love doing that since I have a happy story to tell: after being unable to walk unassisted I have regained virtually all of my functionality. (My stretch goal for my year of PT was to get back to the Advanced Step class at my gym. As you can see in the photo I was able to do that!) The HA peer support program includes training, and we counselors are in turn supported by a wonderful manager of support programs at HA.
I also help manage the NPH Community Network on Facebook which has grown to more than 500 members in the last year. It is a wonderful place to share stories and concerns and to crowdsource possible solutions to the many challenges NPH gives us. Many members of the NPH CN have expressed gratitude for the information and support that is shared there.
My life is much richer and more purposeful thanks to the small but mighty Hydrocephalus Association, and I am very grateful to them for their caring staff, their wonderful conferences and education events, their community networks and their research programs.

Lauren E.6

Client Served

Rating: 5

The Hydrocephalus Association has provided support for me ever since I developed hydrocephalus four years ago. It is a community that listens to my worries and strives to answer my questions about living with the condition. The organization has also recommended doctors for me to visit. Medically, I wouldn't be where I am now without the Hydrocephalus Association.

General Member of the Public

Rating: 5

Our 2 year old has hydrocephalus and without the support of our new found hydro family, we would still be relying on internet searches for answers. We now have a source to communicate with and share stories and experiences.

Client Served

Rating: 5

When a family member was diagnosed, it was terrifying. Hydrocephalus Association has so many resources and offers support - we learned a lot about the condition, and use the brochures to educate others. HA is focused on medical treatments, prevention, and cures - we hope for success. Hydrocephalus is difficult for the patient, but also impacts the family, friends, and co-workers. HA makes living with the condition more manageable, and connects us with others who we can relate to. We appreciate what they do for anyone affected by the condition.

Volunteer

Rating: 5

I don't know what I would have done without the Hydrocephalus Association when my daughter was diagnosed 26 years ago. No internet...no information in the library - just the H.A. always willing to answer the phone and talk to me at the scariest times of my life (from diagnosis to each of my daughter's surgeries). It's because of their personal support and commitment to finding a cure, that I devote my time to this organization.

Volunteer

Rating: 5

The Hydrocephalus Association is not only our hope for a cure for my son’s condition, but they have provided a network of families and support I otherwise would have never found. This organization and the benefit they provide means the world to my family!! We volunteer for the HA because we believe in their mission, which is also our mission - a cure for hydrocephalus. .

Volunteer

Rating: 5

My daughter was diagnosed with hydrocephalus and I had no clue what that was or what that meant. I was first introduced to the Hydrocephalus Association by their materials in the maternal fetal medicine doctor's office. I learned much from this and found comfort from the network that was available from them. If anyone or their family or friend has been diagnosed with hydrocephalus, recently or in the past, I would recommend they reach out to the Hydrocephalus Association for education and support.

General Member of the Public

Rating: 5

I have Hydrocephalus and had a time where I was having many revisions in a short time period and I felt alone. There weren't any Hydrocephalus Support Groups or Walks in New Jersey. I got in contact with the Hydrocephalus Association and I didn't feel alone anymore. Because I know what feeling alone with this condition feels like and I didn't want anyone else to feel like that I wanted to start up a Support Group and a Walk here in New Jersey. I contacted the Hydrocephalus Association and they helped me with everything I needed to hold a Walk and a Support Group. Everyone at the Hydrocephalus Association are amazing.