Happy New Year to all of our Hope for Hypothalamic Hamartomas Patients & Caregivers!
We realize everyone is busy this time of year, but we are asking you to please take time to enroll in the Rare Epilepsy Network (REN), which is a very important research study that the Hope for HH is participating in with the Epilepsy Foundation. As you will recall, EF and 10 other rare epilepsy groups were awarded $1M grant to establish a registry to better understand HH and other rare epilepsies.
We have committed to enrolling a large number of families and we are below our target. The Epilepsy Foundation will be applying for 3 more years of funding to continue the REN and we need to quickly get our number of registered patients up.
Hope for HH set a goal of 110 patients registered. Only 26 have signed up so far. Please help us meet goals for HH by signing up Today. The survey will take just 45 minutes max. It is broken up into sections and you can complete it over several days. No medical records are required, although you will be asked if you have EEG or MRI reports that can be uploaded at a later date. All patients – in the US and international – can participate. The survey can be completed by caregivers and/or patients.
The REN will provide us with much needed data to better understand hypothalamic hamartomas treatment, outcomes and quality of life. You may access the surveys through the following link: https://ren.rti.org/ Enroll.
Finally – if you have ANY reservations about completing the survey, need help, or have questions, please email: ilenepennmiller@gmail.com or call me at 240-205-4807! We want to remove any barriers to the HH community full participation! And if you have completed the survey, give a shout out on Facebook to let others know you have done your share!
Best Wishes for the New Year!
Hope for Hypothalamic Board of Directors
Lisa, Erica, Emma, Julie, Wendi & Ilene
