The following email is being sent to everyone who is on the HopeforHH.org mailing list. If you do not receive this by email, please read and respond. The information below tells why this is so important. And if you would like to be on our mailing list, please go the HopeforHH.org website and sign up for the newsletter.
Do YOU Want to Know WHY Your Loved One Has HH?
So do we! That’s why a top priority for Hope for Hypothalamic Hamartomas (Hope for HH) is to create an HH REGISTRY. A registry is a database of information that can help doctors and researchers better understand and answer a lot of questions about a medical condition including:
- who is diagnosed with HH
- what types of HH people have
- what is the average age of diagnosis
- what are the most common HH symptoms
- which treatments are effective and which ones are not
- why do some patients have rages and others do not
- and many more!
Why Did YOU Receive this Email?
You may be wondering why you are receiving this email in the first place. You have been identified by Hope for HH as either an HH PATIENT or CAREGIVER. We wanted to let you know that a federally funded organization has made available $12 Million dollars to better understand diseases. A group of epilepsy organizations – led by the Epilepsy Foundation (EF) – are joining together to apply for a $1M grant to create a “rare epilepsy registry.” Hypothalamic Hamartomas and our foundation Hope for HH is one of the organizations that EF invited to participate in this collaborative project. Believe it or not, while there are registries for cancer, downs syndrome, diabetes, multiple sclerosis, autism – there is no EPILEPSY REGISTRY – and especially one focused on the RAREST of EPILEPSIES like HH.
How can YOU HELP?
Here’s the catch – the ONLY way hypothalamic hamartomas and Hope for HH can participate in this extraordinary project is if we have the commitment of our HH patients and caregivers. To qualify for this $1m grant, each organization has to ensure 80% patient participation. Hope for HH will need the full commitment of 100 United States based HH patients – no easy task in our small community. We hope this effort will ultimately include the international community as well – but the funding grant is to begin in the US.
So before we dedicate very limited time and money, we wanted to ask YOU if you will actively participate in this project. To help you decide, here are a few of the things we will ask you to do:
- STEP ONE: Reply to this email that YES – you are interested in participating in this project by June 28th.
- STEP TWO: You will receive a form to update your contact information with HH.
- STEP THREE: If the “rare epilepsies” win the $1M grant, you will be asked to complete a detailed intake form about your HH diagnosis, symptoms and treatment in a timely and complete fashion. You may also be asked to gather and submit medical records and reports to confirm your diagnosis and supplement the information you have provided.
- STEP FOUR: Once the registry is up and running, you may be invited to participate in clinical trials. You are under NO obligation. But you will hear about cutting edge research first.
What about my privacy or the privacy of my child?
Please be assured the entire Hope for HH Board are caregivers of HH patients and we are 100% committed to protecting your sensitive medical information and privacy above all else. The registry will include information safeguards so that each patients information will be “de-identified” so no one who looks at the data can identify you or your child. Your child’s information will be assigned a code. If a researcher is interested in learning more about your child, the researcher will ask for permission to contact you. A scientist will not be able to receive any identifying information about your child unless you give explicit consent for your child’s identity to be released to that researcher.
Why is this project critically important?
We just can’t emphasize enough how important this project and the participation of the HH community is. We are a small and dispersed community and registries to understand diseases are very expenses. The foundation has been working for two years to try and figure out how to fund a registry just for HH – but with registry costs over $50,000 annually and a total population of HH patients estimated at 30,000 – their is no way for our small, volunteer run and funded organization to fund and sustain a registry. If we can join in this effort, we will be able to leverage resources of the best doctors and researchers in epilepsy bringing greater awareness and understanding to our small, but devastating condition.
The Board of HH is Asking You to Step Up & HELP
Everyday we think, why did my child get HH and we have to believe we are not alone and that everyone of us struggles with this. Could we have prevented it? Are we making the right choices with surgery and medicine to help our kids? How are the choices we make now going to impact our children when they are an adult? Why do some kids respond to surgery and live a seizure free life and others do not? Why do some kids have terrible rages and other side effects and others never do?
Only when we put ALL of our collective experience into a tool where dedicated doctors and researchers can start to look for patterns and similarities and test their hypothesis will we make the kind of progress that is needed to help our loved ones and perhaps prevent a future generation from hearing those dreaded words - you have HH.
Please let us know if you have any questions. To discuss any questions or concerns via phone or email feel free to reach out to:
To help us keep track of which patients/caregivers are in or out, please REPLY WITH A YES OR NO to: Ilene Miller. Include your name, your patients name if its not yourself, email, phone number and your reply.
Hope for HH Board of Directors