Great organization and such an important cause. They are completely focused on improving the lives of people with Hydrocephalus through supporting research and education to improve their lives.
Finally, I was diagnosed with Normal Pressure Hydrocephalus after experiencing nearly three years of decreasing health. My husband and I knew something was wrong. We tried Native American Healing, Diagnostic Chiropractic, Eastern, top-rated Western but no one even guessed at what was happening.
Then, my PCP, who never gave up, sent me - once again - to a movement specialist who referred me to a neuro surgeon who discovered my NPH. Miracles happened.
My neuro surgeon told me about the Hydrocephalus Association and I have not been alone, even one day. As their motto proclaims: You do not walk alone. HA is responsive, caring, and informative.
Today I volunteer to help others and, with HA's help, I am able to help in many ways.
HA is outstanding. I was so fortunate to find them early in my diagnosis and am so fortunate today to have them by my side and to help others every day.
The Hydrocephalus Association is an amazing resource for those with hydrocephalus and caregivers. They have so many resources for you. I especially like the free webinars they host. They also offer ways to connect with others in the same position for mutual support.
Incredible resource for anybody who has, or cares for someone with hydrocephalus. They provide a very much needed advocacy for a serious condition that doesn’t make the front page.
As a patient with, and the founding WALK chair for the Baltimore WALK , I highly recommend the hydrocephalus Association for all the awareness , support and leadership in. not only supporting Doctor’s , patients and researchers
The Hydrocephalus Association has done an amazing job on raising awareness and has helped me (a parent of someone with hydrocephalus) learn so much and feel so included.
I have received so much support from the Association from referrals and resources to connecting with other patients. It really has assisted in my journey from a patient perspective and I’m grateful for having the association as an entity that can provide a forum for our voice, advocate for further research, connect us but overall be a community where there are others that understand.
This association has been a true gift to me. Not only as a wealth of knowledge and offering resources from a patient perspective, but also offering a forum for support and connection to a community that can help me continue to navigate with a chronic condition while keeping me abreast of latest research and developments.
When I moved to the DMV area, I did not know that there was an association for those living with Hydrocephalus. I am a mother who has a child with hydrocephalus. This organization is very informative, many great resources, and most importantly, a great support system. I’m so happy to have found this organization since moving to the area in 2016.
I was born with hydrocephalus and found about the organization from a coworker whose son also has hydrocephalus. They do AMAZING work. They offer so many different resources to help people with hydrocephalus, parents, and care givers.
Our 1 year old developed hydrocephalus from scar tissue left behind after a benign tumor was removed from her brain. Knowledge is power and in the case of a rare circumstance as this, we are beyond grateful to have HA to turn to.
More than 21 years ago my son was diagnosed with hydrocephalus while I was 34 weeks pregnant. To say that we were shaken to our core is an understatement. And in the year 2000 the internet was not what it is today with mostly scary inaccurate information. The only support we found was the Hydrocephalus Association. They LITERALLY saved us! To physically be able speak to someone who is in your shoes is beyond comforting. I found my son's neuropsychologist through HA. I relied on HA literature for my son's teachers because hydrocephalus is not something you see when you look at him. The "teachers guide to hydrocephalus" was my bible throughout my son's academic years. Even now all of these years later it is still a comfort knowing the Hydrocephalus Association is there for my family if we need them.
I have been living with Hydrocephalus since I was 15. Finding HA has been a huge help in meeting others who can share my struggles with this condition. The support and community is fantastic and we look forward to being a part of this great non-profit.
Hydrocephalus Association has been a great resource for my family as we navigate a new diagnosis in the past 3 years. Their Virtual Connect conference this year provided TONS of information for FREE to whoever wanted to be a part of it. I can’t say enough about how under-recognized but how very important this organization is! Thanks HA!
As a person with adult-onset hydrocephalus, I consider this association my first resource to gaining more insight and information on my condition. When ever I have questions, this is the first place I call.
The Hydrocephalus Organization has helped me so much from allowing me to meet others with this condition to keeping me updated about the latest treatments. The HA's fundraising for research is remarkable and has helped advance Hydrocephalus treatment further and will help find a cure.
I am the mother of a hydro warrior and I love all the work the Hydrocephalus Association does to help people with this condition! All the research they are doing, awareness they are raising, and information they send out helps families so much!
When Harry was first diagnosed with Hydrocephalus we visited the Hydrocephalus Association's website and were able to read lots of case studies about living as a family with the condition. It helped us learn more and for the first time in weeks we felt less alone and more empowered.
We are based in the UK and have gone on to launch a UK based charity to support children living with the condition. The Association has provided guidence and support and has help on this journey.
My child was diagnosed with this condition as an infant. I discovered the Hydrocephalus Association then as I tried to learn about what to expect. Information about surgeries, elementary school, college transitions- the info has always been what was needed. 27 years later- this association is still the best source of information !
Our son was diagnosed with hydrocephalus at 6 months of age. The Hydrocephalus Association has been a great resource for us for over 15 years now. We have connected with others through the HA Walks, read endless information on their website, received printed materials for school staff, and the list goes on. I can’t say enough good things about this organization!
Our son was born with congenital hydrocephalus. We have enjoyed fundraising for the Hydrocephalus Association and attending the annual walks. Meeting other families with similar experiences has been wonderful.
I am an adult who was born with Hydrocephalus. I learned about the Association about 2 years ago. It is probably the most useful Organization I have come across. A year and a half ago I became a Peer Support Volunteer with the Hydrocephalus Association in hoping to assist
others struggling with Hydrocephalus, like myself.
I have normal pressure hydrocephalus and have had a VP shunt for 15 years to keep symptoms at bay. When I was first diagnosed there was very little good information about the condition making the diagnosis even more difficult. I was introduced to the Hydrocephalus Association and they have done an outstanding job of organizing information, supporting research, and delivering top notch education to physicians and patients. Thanks to all the great folks at HA.
Before becoming involved with HA I knew very few people living with hydrocephalus. I was on an island, alone. Now I have many friends with my same condition, I don't feel so alone.
I've had hydrocephalus for fifty years, had 10 brain surgeries to treat the condition. HA funds research findng treatments so one day brain surgery will not be the only treatment option for this condition.
Hydrocephalus Assoc is a great resource for accurate and up to date info. Because of the organization's big heart, support of families, and smart fiscal decision making, I have joined as a volunteer in my region to spread awareness and support.
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.
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.
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.
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
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.
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.
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!
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!
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.
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.
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.
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.
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.
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 !
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.
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.
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.
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.
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.
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. .
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.
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.
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.
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!
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
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.
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 ❤️❤️
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.
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
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
This organization is fiscally sound, utilizing resources effectively and committed to their stated mission.
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.
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.
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.
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.
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.
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!
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.
This organization is truly incredible. I am a 20 year old male in college. Throughout the past couple years they have given me the support I need as well as allowed me to volunteer for them and connect with people within Minnesota that have the same condition as me. With them, we are getting closer and closer every day to find a cure!
I am so happy to volunteer my time to help this organization. We are incredibly happy to have an event for the Hydrocephalus Association in Chattanooga. HA has supported us as friends during times when our daughter, Emalinn, has been through weeks in and out of the hospital. They have also supported us as an organization to get our community engaged and organized and rallied around an amazing cause. They have done amazing things to promote bringing a cure to the forefront of their purpose as an organization, and my family and I support them in the fullest sense of the word!
I have been a member of the Hydrocephalus Association since 1995 when my daughter was born with hydrocephalus. They have always been an enormous support to us and they are leading the pack to help fund/find a cure for hydrocephalus!