For many students with HH, starting a new school year can be very stressful. For many parents and caregivers, it can mean the drama associated with IEP meetings, 504 Plans, and dealing with new teachers – begins all over again. For many students, of all ages, with HH – one of the greatest challenges in…
For many individuals with HH, transitions can be difficult. It can be a challenge to transition from one activity to another, transition from one school to another, and it can be especially difficult to transition from adolescence to adulthood. Each of those could be a blog itself. But today, I am talking about one of…
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…
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,…
Inspired and Hopeful. At the conclusion of the five days, the Hope for HH Board of Directors felt a new sense of energy, inspiration and most of all HOPE for what the future holds for research, treatment and eventual cure of epilepsy within our hypothalamic hamartoma community and those of other rare epilepsy disorders. The…
This week we are meeting up with Jill Nico – the Program Advisor for Disability Resources and Services at Estrella Mountain Community College in Avondale, AZ. She assures equal access for students with disabilities, provides individualized coaching, and plans campus events related to disability issues for young adults. She has served in higher education in…
