Introduction Emma Nott, Hope for Hypothalamic Hamartomas board member, represented our community at the recent EpiCARE Annual General Meeting held in Lyon, France between 16-18 February 2022. What is EpiCARE? EpiCARE is the European Reference Network (ERN) for rare and complex epilepsies. Formed in 2017, it is a network of highly specialized health centers…
Today is National Nonprofit Day. What kind of person starts a nonprofit anyway? I used to think it had to be someone that was a probably a celebrity, really smart, well connected, had access to a great deal of money and probably had lots of business sense. I had heard of the Bill and Melinda…
Hope for HH is excited to update everyone on the work Dr. Varina Boerwinkle, from Texas Children’s Hospital (TCH), is doing in her research to study resting state functional MRI (rs-fMRI) and Hypothalamic hamartomas. Initially, Dr. Boerwinkle performed the first ever group wise study examining the pathway of epileptogenic activity from the hypothalamus to the…
If We Can Create an Animal Model for HH We Will Significantly Improve Our Understanding of the Condition and the Best Interventions The search for new treatments for the seizures and cognitive deficits resulting from hypothalamic hamartomas has been hindered by a complete lack of animal models of this condition. The research proposed here hopes…
HUGE THANKS to ALL around the nation’s capital and around the world who walked and wore purple on Saturday and Sunday for epilepsy and Hope for HH. Special shout outs to those below. If we missed you, please post your pics to Hope For Hypothalamic Hamartomas Facebook page Arizona – Kathy & Colby Jensen, Lisa…
You may be wondering why we keep posting about the WALK? The easy answer is it’s something we can all do! On March 25th, thousands of people will gather in Washington, DC for the 11th Annual Walk for Epilepsy. This is the 10th year Hope for HH will have a team of walkers wearing our…
Community Corner Join the Epilepsy Foundation and Hope for Hypothalamic Hamartomas on March 6 at 8:00 p.m. ET for a special Facebook Live, “When Laughing or Crying is a Seizure.” Did you know that some seizures consist of sudden laughing or crying that the person has no control over? These seizures, a type of…
Feb 28 is Rare Disease Day – HH is Not Alone A disease, disorder, illness or condition affecting fewer than 200,000 people is considered RARE. There are 7,000 rare diseases and disorders. 1 in 10 Americans or 30 Million people have a rare disease More than ½ of people with rare diseases are children. Hypothalamic…
Faith’s Story My pregnancy with Faith was difficult, I developed a strange rash, which we never really got to the bottom of. Due to the rash I had an ultrasound at 32wks to check the size of the baby. It was during this scan that the radiologist noticed there was something not right. This was…
Our friends at NORD & Oregon State University are launching a first of its kind quality of life study among adults with rare diseases called “AWaRDS Study: Adults with Rare Disorders Support.” The study seeks to better understand the psychosocial support needs of people living with rare disorders and is looking at many diseases and…
In honor of International Epilepsy Day, an event created to promote epilepsy awareness in more than 120 countries, Hope for HH would like to highlight and thank our own international support community! In the last 5 years the Hope for HH Medical Advisory Board (MAB) has grown from a mostly US based group of…
March 25th is the National Walk for Epilepsy in Washington DC This annual walk has very special significance for Hope for HH – it is where two of our Founders – Ilene Miller and Lisa Soeby met to walk with their boys to raise awareness about HH and ended up committing to starting a Foundation!…
