The Hydrocephalus Association does a wonderful job advocating, educating and supporting people with hydrocephalus. When my grandson developed hydrocephalus from brain bleeds at birth, the HA website was an awesome resource to gain all sorts of knowledge. This allowed us to move forward with clarity and understanding for any decisions we had to make.
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I have been supporting and volunteering at this association for years. I’ve met many many patients who feel a sense of family in this community, I know the scientists they fund for research and I’ve seen great improvements in many people’s lives. Their motives and positives are clear and they are extremely responsible with how they use their funds.
They’ve helped me gain a sense of purpose by organizing and participating in their walks, and I am super glad I got to know them. Wonderful humans doing wonderful things for Hydrocephalus patients and research every where !!
I am honored to be a part of this organization. Every single thing they do is to better the lives of people living with Hydrocephalus.
HA is a great non-profit that provides resources and funding for research to find a cure for hydrocephalus. One day, my child may have a cure because of this association.
The HA has provided my family tremendous resources and support since my nephew was born. I am beyond thankful and forever greatful for the HA and the work that they do! Thank you, thank you, thank you!!!
This is an amazing group that provides, awareness, support, and much needed funding to find new ways to treat and prevent Hydrocephalus.
I have been volunteering with HA for the past several years in the Atlanta area. They provide such wonderful resources for our family and the community.
Since my son joined this group he has been provided the opportunity to learn about his condition, understand that he is not the only one. The "why me" is not an issue anymore.
The Hydrocephalus Association is such an amazing organization. The work they have done and continue to do to bring awareness too and hopefully find a cure for those affected is immeasurable!
The Hydrocephalus Association provides exceptional support and education to those affected by hydrocephalus, and have an incredible research program aimed at advancing treatment options and quality of life. They are always available to answer any questions and direct me to various resources.
The organization supports research initiatives aimed at finding better treatments and potential cures for hydrocephalus. Their efforts in education, research, and advocacy significantly contribute to improving the lives of individuals living with hydrocephalus.
The HA organizes events, including conferences and local meet-ups, to bring together those affected by hydrocephalus and promote networking and sharing of information. They help bring the community together!
Hydrocephalus Association has been such an amazing resource for connecting other families who have hydrocephalus! The organization puts on wonderful events nationwide!
One of the greatest strengths of the Hydrocephalus Association is their commitment to education and advocacy. They work tirelessly to raise awareness about hydrocephalus and promote research to find a cure. Their website is a wealth of information, providing explanations about the condition and its treatment options, as well as resources for navigating daily life with hydrocephalus. They also offer educational webinars and conferences, giving individuals and families the opportunity to learn from experts in the field.
A wonderful option for those with the condition or families supporting and caring for loved ones. Head to HA for incredible resources, education, information, and community!
Unlike any other non profit. You see the growth. You see the innovation and community. Thank you for all the support and for paving a new path and future for those with hydrocephalus.
The Hydrocephalus Association is an incredible organization that has connected me with so many resources. They reach out and have treated me like family. I am impressed with the organization and professionalism from all staff. Thank you for raising awareness and all of the work you do to further research!
HA has inspired me to work harder to raise awareness and funds to fund a cure for Hydrocephalus. Everyone is supportive and helps guide one throughout the process of education and support.
My family joined the Hydrocephalus Association shortly after my first neurosurgery. We stay involved and educated through attendance at the bi-annual conference, reading newsletters, and watching webinars. We have utilized your excellent staff and volunteers as needed. Our family has sponsored a neighborhood type race/walk every Thanksgiving morning for the past 26 years. I also serve on the Scholarship Committee, HA Peer Support Volunteer, and have written several blogs.
I don’t know where our family would be without the knowledge, assistance, and support of the Hydrocephalus Association over the past years.
I am an adult who was born with Hydrocephalus. I discovered the Hydrocephalus Association approximately six years ago. And it stands out as the most valuable organization I’ve ever encountered! If only I had found it sooner!
About four years ago, I created a WALK Team and joined the Community Network in my area. Sharing my experience makes my burden feel less heavy and the friendships I have made have given my life a greater sense of connectedness to the world. If you, a friend, or a loved one has hydrocephalus, don’t hesitate to become involved with HA!
When our daughter was diagnosed with hydrocephalus at birth, we were very afraid that she would never live a full and normal life. But luckily my husband is an excellent “Googler” and he found the Hydrocephalus Association right away. HA was there to answer questions and provide hope.
The sense of community we have found has been a godsend to our family. My best friend is a fellow “hydro mom” and someone I never would have met without the HA network.
Even though Ashley has had five revisions in eleven years, she is a happy, upbeat kid with a bright future. And when HA funds a CURE, her path will be even brighter!
I have a friend who is very close to hydrocephalus. I had no idea about the condition nor how many people live with it, until she filled me in. HA provides great information and resources for those who need help to get connected and find answers. And their research is making a difference to my friend and the many others who have to live with the possibility of multiple brain surgeries and complications that impact their health and quality of life. I am happy to be a volunteer helping with events that help raise money to serve this community!
Volunteering with the Hydrocephalus Association at HA Connect 2022 in Austin, TX was a blast! The team's passion and commitment are palpable. Everything was well-organized, but what truly stood out was the sense of community. People came together, sharing stories and supporting one another, while soaking up invaluable information from the experts. It's not just an organization; it feels like a family. If you ever think about attending an HA event, I'd say dive in. You won't regret it.
When your child is diagnosed with hydrocephalus it is overwhelming and scary. But when we found the Hydrocephalus Association we gained education and support. And over time the sense of community we have gained is the beautiful silver lining of this horrible condition. And the money they invest in research gives us hope for a future without hydrocephalus!
What a wonderful organization! They are with you from your diagnosis through multiple shunt revisions. But more than support, they're working for a cure and spreading the seeds of awareness throughout the country. If you or someone you love has hydrocephalus, the Hydrocephalus Association can be a benefit to you.
My connection to hydrocephalus and the beginning of my involvement with the Hydrocephalus Association began a little over two years ago - after my youngest daughter Holly was born on September 3, 2021. Shortly after Holly’s birth, her pediatrician Dr. Angelo Palermo noticed that her head size was abnormally large and continuing to grow during our first couple weeks of newborn visits. Dr. Palermo referred our family to meet with Dr. Luigi Bassani at Cooperman Barnabas Medical Center, where Holly was born. After our first meeting and Holly’s first MRI with Dr. Bassani, Holly was diagnosed with hydrocephalus as her brain ventricles were incredibly oversized. She was scheduled for brain surgery and placement of her VP Shunt the following morning at exactly three weeks of age. Our family’s journey into the world of hydrocephalus was officially underway.
Through the following months, our stress levels and worries began to ease as our family visits with Dr. Bassani improved as Holly continued to hit all her newborn milestones. As Holly’s first birthday neared, I remember researching how our family could get more involved with the hydrocephalus community - that is when we found the annual Jersey Shore WALK to End Hydrocephalus.
We registered a WALK Team for the first-time last year in 2022 and had an absolute blast participating, meeting other families and patients who are impacted by hydrocephalus the same way we are. It was an emotional, uplifting day on the boardwalk to say the least. Last year’s WALK is also where I met Carly Weisman. Carly is one of the Co-Chairs for the Jersey Shore WALK to End Hydrocephalus. I remember chatting with Carly after last year’s WALK about her extensive hydrocephalus journey and our family’s story and remember saying to her before we left, “Hey, Please let me know if I can help out more in anyway, I would love to help you out if I can.” Well, that was it – about a week later, Carly contacted me and informed me that her WALK Co-Chair who she worked with for years was stepping down from her duties - she asked me if I would like to join her as new Co-Chair moving forward. Boom, just like that. I was IN!
Fast forward a year, our 2023 WALK event was held on Sunday, September 10th, 2023 at the Bradley Beach Boardwalk and it was a blast, until the monsoon rainstorm abruptly ended our day. Overall, our event was a fun, informative and positive day for all members of this New Jersey hydrocephalus community. This New Jersey community raised over $38,000 which will fund advocacy efforts, education, research and support for more than 1 million Americans living with hydrocephalus. I am looking forward to many more successful events like our New jersey WALK in the future.
HA is a remarkable organization that helps so many people in their various stages of life. They have an amazing staff that is mission driven and you really feel like every dollar raised is meaningful to the organization. I have enjoyed fundraising for HA through local bike racing competitions and will continue to raise awareness of the condition!
I was introduced to the Hydrocephalus Association after I was diagnosed with bacterial meningitis, since then I have been able to utilize them for questions & guidance on my journey.
I have since become involved with a hydrocephalus online support group for the state where I reside. It's been a true blessing for me.
If you are new to hydrocephalus or not, In high recommend for support, guidance or meeting others that can share in your journey.
When my grandson was born last March and diagnosed with Hydrocephalus within the first 24 hours, the Hydrocephalus Association was my saving grace. In my efforts to find out as much as I could about Hydrocephalus, I found the HA. They provided all the necessary information and resources needed with the new diagnosis. During his first few months of life, I continued to lean on the HA for a source of help. Then, we got involved with the Walk to End Hydrocephalus. We had our first Virtual Walk in September 2022. What followed, we didn't anticipate. My grandson, went into emergency surgery 4 days after our walk. The information I received from HA was so helpful during that time. I am now a volunteer leader with HA and am chairing the St. Pete Walk to End Hydrocephalus for 2023. The HA staff is amazing and so willing to help and offer hope!!!!!
When I first developed hydrocephalus, the Hydrocephalus Association helped me find top doctors and connect with others who could relate to my newfound struggles. It's been a number of years since then, and HA is still a big part of my life!
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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.
My son has Hydrocephalus and had his shunt placed at 2 months old. I knew nothing about what he would face in his life until I started researching. The Hydrocephalus Association is where I learned everything I needed to know.
My child was diagnosed with Hydrocephalus at 4 months and needed to have brain surgery. I cannot express the terror that we felt having never even heard the word Hydrocephalus prior to his diagnosis. I was immediately on the internet trying to learn as much as I could.
This organization's diligence in providing top notch resources for parents truly saved us. Between the first visit with the neurosurgeon and the second I was an expert. We have been very blessed in our dealings with this horrible condition but, as we all know, everything can change in the time it takes to snap your fingers. If I ever had any questions or concerns though, I know exactly where to go. This organization is vital to families living with hydrocephalus.
I have a son with hydrocephalus and have been involved with the HA in several different capacities over the last 20 years. It has been an incredible experience to watch this nonprofit grow in areas like support, education, advocacy and maybe the most exciting...RESEARCH! Above all, I have made lifelong friendships with some amazing people who truly know what it is like to live with this condition. Can't recommend the HA enough!
I am the sister of the founder of the Hydrocephalus Association and have been involved since its beginning over thirty years ago. HA was started when my nephew was diagnosed and my sister and brother in law were looking for support and connections to others in the Bay Area experiencing this condition. Since then the organization has moved from their kitchen table to headquarters in Bethesda MD with a budget of over four million dollars and a staff of 10. HA funds research to find a cure (since as we say a shunt is not a cure) and continues to provide support and education to individuals and families with this condition.
My daughter was born with this chronic medical condition. There is no cure and the only treatment involves brain surgery. I’ve been involved as a volunteer with the Hydrocephalus Association for 12 years and I am so thankful for all they do, from providing advocacy, education and support to families to funding research to find better treatments and a cure.
The Hydrocephalus Association is making a huge impact in the lives of those living with this life-threatening disorder. I am the mother of a daughter born with hydrocephalus. She underwent about 8 brain surgeries before her 7th birthday; today she is a thriving senior in college. As a family, we dependended on the resources of HA. As she got older, our daughter connected directly with HA and learned to become her own advocate. I joined the Board because of my daughter and the many people I knew who were diagnosed with normal pressure hydrocephalus as mature adults. I am inspired by HA's leadership in generating more research and awareness of hydrocephalus.
The Hydrocephalus Association has been a huge blessing for countless people with amazing education, support, resources, and research. I have gone to them many times seeking knowledge and connections and they have been so helpful!
Our lives would not be the same without HA.
Knowledgeable, understanding, caring and just overall wonderful staff and doctors are all part of this organization.
They truly care about improving the lives of folks with hydrocephalus and are doing everything they can to fund a cure.
We are so grateful for HA! When our daughter was diagnosed with hydrocephalus, the only information we received was a black and white print out from the hospoital. It didn't tell us much. Luckily we quickly found HA and received the support we desparately needed. Their team is tireless in their quest to help those suffering from hydrocephalus and to find a cure for this life threatening brain condition. They make themselves available to us night and day, which is expecially amazing given their relatively small staff. Thank you HA for all you do for us!
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.
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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.
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!
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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.
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.
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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.
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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!
One week after finding out that my son was diagnosed with hydrocephalus, the hydrocephalus association called and spoke to us answered all of her questions and gave us support that we could not have got from anywhere else. They gave us connection for support group meeting, and the local walk chair. Over the last five years they have been nothing but supportive and treated us like family.
The people that I have met at the Hydrocephalus Association and through the Hydrocephalus Association have helped my family and I through some of our hardest times. They are organized, knowledgeable and are doing great things to lead us to that cure. With their help and guidance, folks are raising awareness, raising money and really assisting families that need it most.
If anyone has any hydrocephalus related questions, this is the group to work with.
I am a volunteer with the Hydrocephalus Association (HA) and also a mom of a 12 year old boy with Hydrocephalus. This is a lifelong journey for us all and each of our kids will have different challenges to face.
The Hydrocephalus Association has been there for me and my family from the beginning. Especially when I received that phone call saying my son had Hydrocephalus. I could not even spell the word. But after calling them to see where to turn, I felt a great comfort to have someone on the other end of the line knowing exactly how I felt and what I was going through. Their support and guidance is amazing you will never feel alone having them just a phone call or email away. The support services offered by the HA is like no other, available by phone, email and all social media outlets. There are also many opportunities for all ages to be involved with the HA, we are very grateful to have them to turn to since the day of my sons diagnosis at 23 months.
I was given a Hydrocephalus Association booklet by my pediatric neurosurgeon on the day my son was scheduled for his first shunt placement in 2001. Since then, our family has been involved, on some level, with this amazing organization. The resources, support and friendships we have made through the WALK programs, educational conferences and the numerous social media networks they provide has made our hydrocephalus journey alot easier!
The Hydrocephalus Association (HA) has been a life-saver for our family! When my daughter was diagnosed 22 years ago, we had nowhere to turn and couldn't find any useful information about hydrocephalus. Not only did I call the Association when we received the diagnosis, but I called their support person each time my daughter had a revision (she's had 19) and I had more questions. During one particularly frustrating experience, I called the HA and my question/issue was forwarded to their medical advisory board for input. As a result of the invaluable feedback I received, my daughter now makes more informed decisions regarding pain management during a malfunction.
The Hydrocephalus Association has a LOT to offer families living with this condition. Not only do they offer one-on-one support, the Association publishes newsletters providing families with information on hydrocephalus we wouldn't receive elsewhere, they hold conferences bringing together the leading neurosurgeons, researchers and shunt representatives eager to share the latest and greatest information, they have community networks throughout the country, they hold numerous Walks across the country raising more than $1 million annually to fund their services and research initiatives. There are also many scholarships awarded to young adults with hydrocephalus who are attending college.
This is a wonderful organization!
This is why our family volunteers as WALK Chairs for the WNY Hydrocephalus Association WALK. Joining other families with the same goal...to find a cure and raise Hydrocephalus Awareness.
Our family and the Hydrocephalus Association supports Baby HOPE's Journey to find a cure for Hydrocephalus. Hope is the twin daughter of Kelly McKenzie and Corey Zientara
At 4 weeks old Hope was admitted to the Pediatric ICU at Childrens Hospital due to cardiac arrest. Several issues arose because of the stress and trauma she went through. Hope spent over a month in the hospital fighting to recover. One of the results Hope endured due to cardiac arrest was a condition called Obstructive Hydrocephalus. Hydrocephalus is an abnormal accumulation of fluid-cerebrospinal fluid or CSF- within cavities called ventricles inside the brain. To treat this Hope had to have surgery in which a shunt was placed. A shunt channels the flow of fluid away from the brain and into another part of the body where the fluid can be reabsorbed and transported to the bloodstream. Unlike many surgical procedures that can cure a condition, the placement of a shunt does not cure Hydrocephalus, it only helps to control it. Hydrocephalus is a lifelong condition that requires long term medical care and usually future surgeries to revise the shunt to ensure functionality. Though it has been a long hard road her journey is far from over but she has proved that she is a Fighter!
Life is short and it can change in an instant so Believe in miracles because Hope is proof they exist.
Learn from yesterday, Live for today, and ALWAYS HOPE for tomorrow!
Support The Hydrocephalus Association and Join a WALK in your area or become an advocate to help us find a cure!