Our son was diagnosed before his first birthday - over 10 years ago. Not long after diagnoses we found this organization and have been so thankful to have access to their resources and community. Through them we have been able to meet other families who understand the journey of a rare medical condition and have been able to have informed conversations with our son's medical team. Out of a immense appreciation for the organization I have been volunteering as a member of their Board of Directors for the past 5 years and have seen how much genuine care and hard work goes into running Hope for HH. The volunteers are passionate, dedicated, and truly care about improving the lives of our community.
As cofounder of this organization, I can say it has been the most important work I have ever done. My colleagues and I have worked to create a collaborative, internationally focused mission that is focused on the patient and and the best possible treatments and outcomes - based in science! We are driven to help families wherever they are on their journey and support research that can answer the challenging questions. We have been able to influence the way patients' are treated and ensure the patient voice is always included in ALL the importance discussions!
This organization was started by Mom's looking for answers for their kids. I was one of those kids! When I was diagnosed at 3 months of age, there were no treatments and the doctors said I would be in a group home by age 5. I am now 27 - tumor free and seizure free and living an incredible life thanks to the work of those incredible Mom's, researchers, doctors, advocates and countless volunteers! They have all worked tirelessly with limited resources and created an international organization that has driven change and created HOPE!
HOPE is such a special charity to me because it has supported my friend so very much through her darkest days suffering with such a difficult illness. The community within this charity are warm and caring but also share a huge wealth of knowledge about HH and the difficulty families and patients face. Stories of wins also are shared and this charity continues to fight to find new ways to support those struggling and how individuals can recover and have a good quality of life.
Hope for HH is an AMAZING organization! I believe we were first introduced to the organization when my daughter was getting ready to have her first laser ablation surgery. Hope for HH had left a care package for our family with the neurosurgeon’s office. Best of all was the personal note included from a fellow HH caretaker welcoming us, wishing us well, and providing us with her phone number should we need anything while we were in town for the surgery. We immediately felt so supported.
Since that time, the Hope for HH website has been a huge source of resources for us. It is always up-to-date with the most current news and research surrounding HH. Not to mention, reading the stories shared by other HH families gives us such a feeling of community and support. It keeps us in touch with each milestone, celebration, victory, and continues to give us hope.
Now 5 years later, and 5 brain surgeries later, our daughter continues to fight to be seizure-free. She is a true HH warrior and we feel so fortunate to be a part of this inspiring, supportive community. We are so thankful for the Hope for HH organization and all the people involved. They truly care about each HH patient and family, and are fighting with all of us to find a cure.
Hope for HH has been essential for us as a family to give my daughter a voice.
They have provided support through emails and webinars, allowed the community of this rare condition to connect and provide critical evidence about a rare and often misunderstood condition.
Hope for HH are also committed to the mental health associated with this condition but also their caregivers. They hold free mental health sessions for many different groups so everyone can benefit from this resource.
As a caregiver I have been able to use board members to act as a sounding board when trying to prove my daughter's seizures were related to her HH. We have a folder we take to each new appointment with clinical papers from the easy-to-use Hope for HH resources section on the website. No one can argue with evidence-based medicine.
In June 24 my daughters temporal lobe epilepsy diagnosis was overturned, and she now has the correct diagnosis of HH epilepsy with an appropriate specialist team around her. She is now on the waiting list for surgery. We are eternally grateful for the ability to arm ourselves with knowledge and support provided by Hope for HH.
Truly a remarkable dedicated team.
I have nothing but amazing things to say about Hope for HH. 20 years ago I had a successful removal of my HH at the Barrow Institute. I would like to thank Dr. Rekate and all of the amazing staff for the care I received. It was a blessing to connect with others from the Hope for HH community as they were super supportive. When I connected with them, I felt inspired to write a book about my HH and past trauma, which inspired me to publish two books! Sharing my story has given me a confidence boost about being unique and I hope it gets better! Thank you Hope for HH!
Absolutely fantastic charity focussed on such an unknown condition. Volunteers and runners of Hope for HH are doing an immense job for the beneficiaries.
We discovered Hope for HH and it changed our world. We have learned so much about our son’s rare condition because of the organization. River has one of the best Neurosurgeon and Neurologist in Houston because of Hope for HH. The research, studies, webinars, and community provides us with knowledge and courage to advocate for our son. We are forever grateful for Hope for HH.
Hope for Hypothalamic Hamartomas helped educate our family on the risks of seizures, hospitals and doctors that specialize in HH care. They provided up-to-date links and data on current resources and treatment options.
Additionally, they provided a gift bag of resources upon our arrival at our out-of-state Neurology and Neurosurgery evaluations. It brought me to tears to know Hope for HH was there to support us from the beginning and throughout our entire journey to get our daughter the specialty care she needs for such a rare condition.
Our journey with Hope for HH began eight years ago when we took my then 6-year-old son Reece to Phoenix, AZ for laser ablation surgery of his hypothalamic hamartoma. Although in the middle of a major city filled with people, my husband and I felt isolated being 2000 miles away from home, knowing virtually no one, and staring down one of the biggest obstacles we would ever face. The morning of the surgery, a sliver of “hope” came in the form of a care package waiting for us in pre-op. I couldn’t tell you every item in that bag, but I will never forget the hand-written card with encouraging words and contact information from one of the Hope for HH volunteers and fellow mom of a child dealing with the same rare condition. It was a lifeline for me. I later learned that’s one of the many ways Hope for HH reaches out to families and provides assistance. The days, weeks, and months following surgery were difficult ones, but the connections and friendships I made with the community through Hope for HH helped and continues to help me navigate this unpredictable journey that is HH. From the tools they provide for diagnosis and treatment options, to the community networking to combat the isolation and hopelessness, to the research they help fund, it’s truly a world-class organization that I am grateful to be a part of. I only hope one day to bless someone else the way they have blessed me.
Our family was so fortunate to find Hope for HH online in Sept 2011. I was able to connect to other parents that were raising children with rare diagnosis. World no longer felt lonely, I found support, understanding and much needed information to move forward with the choice of treatment for our child. Forever grateful to all that we meet on our path dealing with hypothalamic hamartoma.
Hope for HH is an amazing nonprofit organization! Its has really helped me and my family explore the challenges and information on this rare disorder.
I am so incredibly grateful for this organization. Navigating a rare disease is immensely difficult, and when we first received my daughter’s diagnosis, I was completely overwhelmed and terrified. Upon finding the Hope for HH organization, I learned so much from their website and videos. I was able to find specialists who could treat my daughter. And I found a group of individuals who selflessly worked to help others. They bring together experts in the field to share knowledge, host virtual gatherings for individuals and families navigating HH, and support research. I’m so impressed by the leadership of this organization, and will be forever grateful for their guidance.
Our family have been supported in amazing ways by the organisation. We had no where to turn to in the uk despite speaking to so many doctors. Thanks to this organisation my parents are now well informed not only on the condition but options available to us.
Hope for HH has been a great support to my family In Particular my wife who went through a terrible time after undergoing surgery she should never have had. They have helped us as a family have a better understanding of this rare condition which we could not find any where else.
Hope for a Hypothalamic Hamartoma is a lifeline for those affected by this condition including patients as well as their caregivers who are dedicated to providing support in so many ways every single day.
This organization is dedicated to providing accurate and current information/education and support to their members. Equal energy is placed on recruiting exceptional healthcare professionals with a passion for promoting research studies and discovering optimal treatments with the intent of improving the quality of life for these individuals. This is a definite challenge for a condition that is very rare, bringing a small volume of patients to any individual healthcare organization.
As a healthcare professional myself working with this organization for over 20 years I can genuinely say I have never met a group more dedicated to being a voice for this patient population. The leaders and members of this organization are a true inspiration to me.
My daughter has a hypothalamic hamartoma. Hope for Hypothalamic Hamartomas (Hope for HH) has been an amazing resource my family has come to rely on Hope for HH as a place to educate ourselves, explore treatment options and connect with other families that have been affected by HH. My experiences has led me to recently volunteer for Hope for HH to bring my skills to support the organization as it continues the important work it does to be a critical resource to any family that is faced with HH
I was misdiagnosed as having temporal lobe epilepsy, no doctors could give me the help and support I needed after this devastating error but this is where the hope for HH charity stepped in. Not only in supporting me mentally but by guiding me in getting the relevant information I needed. They have been a god send to me and my family
If anyone had asked me about hypothalamic hamartomas 4 years ago I would have been completely unaware that such a thing exists. My grandson Wyatt had been diagnosed with epilepsy and during testing for that, it was discovered that he also had a tumour on his brain. This was not news that anyone wanted to hear, however my daughter and her husband took it and began the long journey with Wyatt, in search of a better life with less seizures for him. Laser surgery was done on September 1, 2021 to remove the tumour. It was supposed to be an almost in and out procedure, they guessed at 2 - 3 days in hospital. Wyatt remained in hospital for 31 days with myriad complications from the disease. My daughter had been doing research from the moment she had been told of Wyatt's condition. She found "Hope for Hypothalamic Hamartomas" and got in touch with them straight away. Through them, she was able to learn so much more. She found other families that had been through the same types of post surgery issues thay Wyatt was now facing. He gained 27 pounds in the 31 days he was in hospital. Wyatt had always been a very slim, active, athletic child until that point. He was left with his body not being able to regulate its fluids, balance its sugars and salts, loss of muscle from being off his feet and pain all over from rapid weight gain, among other things. Hope for HH stayed in contact, encouraged my daughter the whole time, helped her with suggestions of ways to assist Wyatt along the new road he was on. Wyatt had been left with Prader-Willi symptoms from the surgery and continued to gain weight monthly even with a severely restricted diet. HH is a very rare disease, the complications that go with it vary from patient to patient along with the severity they experience. Much more research is needed to help these children find their way through the process of making a new life, it truly is life changing for them and their whole family. With an organization like Hope for Hypothalamic Hamartomas, there is a chance that more people will get the help and the support that is so important for them in a time of great importance. With more research, I have hope for the children and for our Wyatt.
When my son was diagnosed with a Hypothalamic Hamartoma, we felt adrift at sea. Our world turned upside down in an instant. Thanks to the support, information, and services provided by Hope for HH, we quickly found our feet and were able to move forward confidently with his health needs and treatment. Hope for Hypothalamic Hamartomas makes a world of difference to the sufferers of this syndrome, their families and friends, and the medical world every day. We couldn't be more grateful for them and what they do.
After my misdiagnoses I approached this organisation, it was the best thing I did. Not only did I get useful informative information but the love and care shown was above and beyond and still is to this day 10 years later. It’s great to know you are not alone. I couldn’t be more grateful if I tried.
Very helpful information on the website, and also the community.
You will be glad to meet and feel the support of people there.
This nonprofit organization was able to provide information on our son's diagnosis, with current treatments and facilities for care . There is no other site regarding this ultra rare disease. They continue to search for the latest information, push medical care and treatment forward and provide support to families.
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When our son was first diagnosed with HH we received the prognosis that he would be in a facility by the time he was a teenager. The neurologist did not feel there was anything that could be done. It was heartbreaking. My husband then searched the web and within 5 minutes we learned more from the Hope for HH site than we had from the doctor. We also found hope.
My daughter was diagnosed in 2005. At the time there was no patient support or advocacy group for this rare disorder. This organization continues to provide support and hope to my family. I don't know what I would do without them.
Hope for Hypothalmic Harmartomas is a phenomenal nonprofit doing excellent work to reach people throughout the country and in fact, world! In my professional work I interact and work on behalf of numerous nonprofit agencies and this one is certainly top of the line. Using a small overhead and highly educated and experienced staff and volunteers, this nonprofit is achieving great success in all that it does. Hope for Hypothalmic Harmartomas is an organization to invest in, both financially and with time!
I have witnessed this organization working to make HH known to the general public, to provide a vast amount knowledge about treatment options in plain English and most importantly to give hope and compassion to families. Their work is selfless and tireless.
I helped to found Hope for HH and in the past few years we have grown a solid community of patients, professionals and supporters of the foundation. With a completely volunteer staff, it has accomplished so much to raise awareness, expedite diagnoses, and ensure patients and caregivers are supported. The board of directors brings incredible motivation and energy to this cause!
This organization helps so many people. It is incredibly well organized and the staff is dedicated beyond compare.
The information they provide, the advocacy they do, and the concern they show has been an extremely important resource as we navigate our son's diagnosis. They help connect people with this rare diagnosis to create important supports and share experiences. We would have been lost without this organization and I am so thankful for all the hard work they put into helping HH families. Thanks!