March 26 is International Purple Day – the international color representing epilepsy awareness. Launched in 2008, Purple Day was conceived by then nine-year old Cassidy Megan of Nova Scotia who wanted to increase worldwide awareness of epilepsy. Her goal was to dispel myths and build community for people living with seizures. She was a huge…
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…
No matter what country you reside in, it is important to educate yourself about the process to get the BEST care. In the United Kingdom, Great Ormond Street Hospital for Children (GOSH) has a team of mental health professionals with expertise in Hypothalamic Hamartomas (HH). However, because GOSH is a tertiary referral centre – they…
Hope for Hypothalamic Hamartomas recently welcomed 5 new advisors to our Medical Advisor Board. Collectively they bring expertise in neurology, neurosurgery, genetics, basic research, endocrinology, imaging, and thermoablation. We are delighted to have them on board. Please join us in welcoming the following outstanding researchers, clinicians and health care professionals: Click here for the complete…
Hope for HH seeks opportunities to better understand the many facets of living with HH and epilepsy. We frequently share research projects that encourage patients and caregivers to answer questions that will lead to a better understanding of particular topics. The Rare Epilepsy Network in conjunction with The Children’s Hospital of Philadelphia (CHOP) is…
For many individuals with HH, one of the most difficult challenges in day-to-day living involves something professionals call Executive Functioning skills. Executive Function skills serve as the Command and Control center in the brain – they help you manage life tasks of all types. Does this sound familiar – you or your child may struggle…
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…