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 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…
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…
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…
Congrats to Hope for HH Medical Advisory Board members Drs. J. Helen Cross & Alexis Arzimanoglou, editors of the newly released publication, “Epilepsy Surgery In Children: Time is Critical.” The book includes contributions from other MAB members including Dr. Jack Kerrigan and A. Simon Harvey, as well as HH Symposium participants including Drs. Sarah Ferrand-Sorbets,…
Dr. Isabel Heyman presented findings from a recent research study at The 3rd Annual HH International Symposium (London, Sept. 2016). In brief, Dr. Heyman analyzed 46 patients and found greater than 70% had behavioral/emotional disorders (including ADHD, anxiety, mood, etc) and 46% exhibited rage/aggression. 50% of patients also had cognition issues from mild to severe.…
The Rare Epilepsy Network (REN) is a consortium of partners committed to conducting research to improve outcomes of rare conditions associated with epilepsy and seizures. Together, we are committed to addressing the urgent health challenges of our rare epilepsy community by engaging patients and caregivers, making data available to researchers, and investigating causes and consequences…
The Epilepsy Leadership Council (ELC) (formerly Vision 20-20) is a coalition of professional, governmental, and non-profit organizations representing patients with epilepsy and their families. The mission is to serve as a mechanism through which organizations can work on shared goals and projects that will have a positive impact on the lives of individuals with epilepsy,…
What is rs-FMRI? And why is it relevant to HH? Hear how Dr. Varina Boerwinkle, Pediatric Neurologist, Director of Resting State Functional MRI, Texas Children’s Hospital is using resting state functional MRI at Texas Children’s Hospital to better target HH for surgery like laser ablation. More than 70 patients have been tested. You can listen to…
I have a confession to make, we are a bit addicted to Amazon in our house and we use it for dog food, gifts, clothes, household goods – really you name it. AmazonSmile is a website operated by Amazon with the same products, prices, and shopping features as Amazon.com. The difference is that when you shop…
This month you can give and save even more on “Goodshop Sundays!” When you shop on Good Shop through 11/27, even more of your purchase will benefit Hope for Hypothalamic Hamartomas. So whether you are buying shoes for your kids, clothes for you, home goods, travel, cleaning products, or holiday gifts – nearly anything –…
