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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

47 Stories from Volunteers, Donors & Supporters

General Member of the Public

Rating: 5

My name is Bella I am 1 year old I was diagnosed with hydrocephalus in my mommies womb and I have had two brain surgeries before the age one.

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.

Dawn J.2

Volunteer

Rating: 5

When my son was diagnosed, I didn't know where to turn. HA gave me great publications and answered so many questions. Doctors are great at explaining medical, but there are so many things I needed to know about how to advocate for my son and parent a child with unique medical needs. I was so fortunate to find HA.

Additionally, HA is the largest non-profit dedicated solely to hydrocephalus, and their research program continues to enhance basic understanding of hydrocephalus, improve patient treatment, and stimulate the research environment. This is a phenomenal organization.

Volunteer

Rating: 5

The Hydrocephalus Association has been a part of our lives since I was pregnant with my son. They were the first of whom I contacted after getting the diagnosis when my son was 18 weeks in utero. I cried, they listened and gave me hope. They also sent educational materials to us so that we could learn about the condition and possibly what to expect. My son is 10 now, when he was 2 I started volunteering as a WALK Chair here in Kansas and have been doing so ever since!

Tonya Newman W.

Volunteer

Rating: 5

Hydrocephalus association is a wonderful friendly helpfully nonprofit we started walking at there events 5 yrs ago and now host the walk in our town

Christine V.

Client Served

Rating: 5

I am one of those with hydrocephalus that those in the Association call a "dinosaur". Why you may ask? Well, I was diagnosed when I was two months old and was shunted for the first time, then, as well. I lived 11 years with this shunt and felt as though I had hydrocephalus beaten. Then came my first shunt revision. Then, the next. Then eight or so years passed and that shunt malfunctioned. Another revision. All this time, over all these years, I had never met or even known of anyone else who had hydrocephalus like I did.

Fast-forward, now, to 1998. My sister and her family lived in Virginia and I found out that the Hydrocephalus Association conference was going to be in Washington, DC. I will never forget the day that my sister and I walked into the conference room. I had NEVER met another person with a shunt and now I was in a room filled with them! It was quite overwhelming. It did not take long for me to feel as though I truly belonged and my experience with hydrocephalus mattered.

Since 1998, I have attended almost-every, bi-annual, conference. I cannot say, using mere words, how life-giving and supportive this Association is for me and so many others. I have learned so much about my own condition and the resources that are available to me through this Association.

Since 1998, I have had several more revisions. Going to HA conferences in-between has given me hope and taught me that there ARE others "out there" who understand and know exactly what I am going through. Though miles separate us, the Association is always a phone call (or e-mail) away and I do not hesitate to continue to reach out, knowing that those that I am reaching out to truly understand.

One thing I have yet to mention is: I am now 53 years old. Years ago, my parents were told that I would not amount to anything. I am here to proclaim: I am MUCH more than that. I have an AA degree in Human Service and I, very successfully, live on my own and give back by helping others in my church and in the community. Life is a gift and, hopefully, I am doing my best to live out my gift in gratitude by living each and every day to the fullest.

Angel T.

Volunteer

Rating: 5

I have been involved with Chattanooga HA for over 2 years now!! I do not have anyone related to me with Hydrocephalus BUT have falling in love with a sweet 7 yr old who does!! She has taught my family the true meaning of being a warrior!!! I love the community connections I have made with surrounding families that share the same cause. Our small walk continues to grow each year and I can't wait to see what the future holds for this area!!! Working hard daily to find a cure for Hydrocephalus ❤️❤️

1 Toni39

Client Served

Rating: 5

I was diagnosed at 6 weeks old with Hydrocephalus, I started educating myself about the diagnoses on my on in my formative school years.
I discovered the Hydrocephalus Association a couple years ago and it has been a God Send to be in terms of support, and connecting with others who have the dianoses.
I felt so alone, depressed and frustrated connecting with others through the HA has helped me emotionally and socially.
I highly recommend this group if you or someone you know and love is diagnosed newly or otherwise.

1

Client Served

Rating: 5

The Hydrocephalus Association is the biggest non-profit focused only on hydrocephalus in the U.S. and it shows. They have an amazing amount of education materials, an online library of information about hydrocephalus, a supportive and caring staff and they're making a difference. The Hydrocephalus Association funds research and is the largest funder of hydrocephalus research in the U.S. (other than the government.) Federal government funding for this condition is abysmal -- only $6 million per year. HA is truly driving the pace of research.

Review from Guidestar

2 Melenie D.

Volunteer

Rating: 5

Our daughter was diagnosed with Hydrocephalus shortly after her birth at 25 weeks in 2000. I was immediately online searching for any and all information s my husband and I worked to understand the implications this would have on Olivia's life. We were handed the only information that the NICU had available... a brochure from the Hydrocephalus Association. I made the call. As a result of that initial contact, we have volunteered with the Hydrocephalus Association through 3 states and over the course of most of the past 15 years. They have assisted in guiding us to great Neurosurgeons from coast to coast. The improved surgical protocols and information gained from research funded by the HA have helped to keep our daughter alive and preserve her intellect and quality of life. We currently reside in the Charlotte, NC area and are deeply involved with the Walk and the Community Network as we focus on raising funds for continued research for a cure. Over the past 10 months, we have persevered through 22 brain surgeries and an infection that she was not expected to survive. Yet, today she is recovering and will be back in school when it starts back up in 8 weeks, continuing her straight A course of studies, and hoping to hold at her lifetime count of 33 brain surgeries. We are incredibly grateful for the personal support from everyone at the HA; from the Board to our local group, as we moved through such a difficult, frightening and stressful time. Not only do they have a laser focus on finding cures and improved treatments, but in rallying and providing much needed emotional support as families and individuals walk through their individual journeys with Hydrocephalus.
No other nonprofit organization focuses on raising funding for research. Having investigated the other Hydrocephalus groups out there, and how they make use of their finances, we will continue to support the Hydrocephalus Association, confident that they are financially strong and responsible. -Melenie, Tim and Olivia Dailey

2

Volunteer

Rating: 5

This organization is fiscally sound, utilizing resources effectively and committed to their stated mission.

Previous Stories
4

Volunteer

Rating: 5

It is a pleasure to volunteer for and receive services from the Hydrocephalus Association. I have been involved in this organization for the past ten years, and have full confidence in their mission and long-term plan to help hydrocephalus patients and their stakeholders. This is done through advocacy, research, support, education, and more. The breadth of services offered with such limited staff speaks volumes about their commendable fiscal decision-making and overall management of volunteers. I highly recommend involvement with them to anyone who has interest in or connection with hydrocephalus.

2 David358

Volunteer

Rating: 5

I was born with Hydrocephalus over 30 years ago, and after being symptom free for over 20 years, in the summer of 2013 I had a shunt malfunction. It was during this time that I found HA . Since then I have met some of kindest and gentlest people committed to finding a cure. HA is not just an organization, its a true community. I am honored to be part of it.

1

Volunteer

Rating: 5

As a patient and volunteer, I'm very thankful for finding Hydrocephalus Association. I've worked with other nonprofit organizations and none of them compare to HA! They truly care about each of their volunteers and all of their patients. I'm so thankful to have found them in my time of need and to have them like a family.

1 Jessica258

Volunteer

Rating: 5

We have really enjoyed the last 4 years working with HA. We have been able to meet some wonderful people that have supported us by helping us find answers when our daughter is having issues and provides love and prayers. Getting to meet other families that deal with hydrocephalus and know that you are not alone because others are there supporting and educating us on new procedures and funding the research for them. I am so grateful for them.

Previous Stories

Volunteer

Rating: 5

The help, support, listening ear, help finding Drs and about treatments are priceless. They've helped us start a WALK in South Carolina and the connections of friends that helps us know that we are not the only ones who are fighting for our childs life. It's such a blessing. Thank you HA for everything you do for us and others like us.

1

Volunteer

Rating: 5

When my daughter was diagnosed in utero, her neurosurgeon handed me a booklet written by HA. It was so helpful that I went to the website to find more information. Along with a wealth of knowledge, I was able to start a local Community Network so we could meet others and share our story. Their support is amazing!

1

Volunteer

Rating: 5

I have been involved with HA since 2000, when our daughter was born with Hydrocephalus. They do a great job with educating, supporting the Hydro community and sponsoring research.