Hope For Hypothalamic Hamartomas - August 2020
Help Improve Care for Children in Search of a HH Diagnosis
Hope for Hypothalamic Hamartomas (HH) is proud to partner with the Child Neurology Foundation (CNF) to conduct a brief survey to understand caregivers’ experiences on their journey to a diagnosis, with the goal of finding ways to shorten the diagnostic odyssey.
CNF will share anonymized information from this survey with health care providers, so they are better able to serve our community through what can sometimes be a very long process of getting a diagnosis.  We are looking to get input from both those who have received a diagnosis and those who are still searching for a diagnosis.
We welcome participation from primary caregivers of children with neurological conditions.

  • This survey should take less than 5 minutes to complete.
  • Only one survey should be completed for each child.
  • Children under the age of 18 should not complete this survey. Instead, an adult should complete this survey on their behalf.

We respect your privacy and all information obtained from this survey will be presented in summary form, grouped with other responses so that no one individual can be identified.
Thank you for supporting this research and helping improve care for children with disruptive and harmful behaviors. This survey opportunity will close August 19th.

With love and hope,
 
Erica Webster, Lisa Soeby, Kathy Jensen, Kimberly Ranson and Emma Nott
HH Comorbidity Survey: A Look At the Data
Last year Hope for HH launched a comprehensive HH Comorbidity Survey. The goal of this survey is to provide medical professionals and researchers information about hypothalamic hamartomas (HH) that they may not already know! We wanted to uncover the undiagnosed or under-diagnosed issues individuals with HH and their families are struggling with every day. As an international organization for those with HH, we have translated the survey into English, Russian, German, French and Japanese to ensure we capture the concerns of our HH families around the globe. The survey remains open as we continue to gather data. We have been approached by many in the HH community as well as medical professionals to share our preliminary findings.
If you haven't taken the survey, we urge you to do this today. Help us uncover the undiagnosed or under-diagnosed issues associated with HH.
Webinars and Other Community Resources
Hope For HH is partnered with several organizations to help our community during the Covid-19 pandemic. Our partners have been and continue to provide resources associated with Covid-19, telehealth and other topics associated with rare diseases. Below is a list of past and upcoming webinars which we hope will help you during these stressful times.
Webinars
Upcoming Conferences

Innovation and Action to END EPILEPSY Community Day Conference - Free

Description: The 2020 Community Day is going virtual and nationwide on August 29th! Wherever you are on
your journey, you are not alone and our virtual Community Day is for you. Organized by, and for,
people affected by epilepsy, the Epilepsy Foundation is offering this conference to support you and
your loved ones on your epilepsy journey. This year’s free event offers a day of the latest updates
and a chance to connect with others affected by epilepsy, healthcare providers, and the Epilepsy
Foundation. Join us to learn more about what’s new in epilepsy treatments, genetics, and how you
get involved with the Epilepsy Foundation.

Topics covered include:

  • Telemedicine: How We Got Here and What’s Next
  • Genetic testing and epilepsy
  • Sudden unexpected death in epilepsy (SUDEP)
  • Cannabidiol and making informed choices
  • Getting involved and making change in your community
  • And more
Recent Publications

Keeping people with epilepsy safe during the COVID-19 pandemic. Hope For HH Medical Advisory Chair, Prof Helen Cross is a co-author. https://n.neurology.org/content/94/23/1032
International HH Awareness Day
Want to Give Back to the HH Community?
If you are interested in becoming a volunteer for Hope for HH, to get the process started we invite you to complete the following Volunteer Inquiry Survey to gather a bit more info about you and your interests.
Hope For Hypothalamic Hamartomas | www.hopeforhh.org | info@hopeforhh.org