Where Were You Treated for HH?

Summer is a great time for reflection. Hope's founders and board are spending time this summer reflecting on how far Hope for HH has come in 9 years and how we will serve patients and caregivers for years to come. Stay tuned for plans for the 4th International HH Professional Symposium (Fall 2019), research grant updates, and findings from an international comparative effectiveness pilot study.

Meanwhile, we could not continue our work without exceptional volunteers like Diane and Traci featured below or the fundraising efforts of caregivers like Laura Mellon whose "Jog for Jack" has already exceeded her goal of raising $2000 and is still underway. Thank you.

We continue to source for volunteers who have experience with event planning, finances/accounting, fundraising, program administration, pr/marketing, and more. If you or someone you know would like to join our all volunteer team - please email. They need not be touched by HH - just eager to put their skills to good use for our community.

Wishing everyone a FUN summer!

Ilene Miller, President

HH Treatment FACILITIES Updated

In 2017, Hope for HH surveyed hospitals to compile a list of those hospitals that have treated at least 6 HH cases, are NAEC level 4 status and provide multi-disciplinary care. Check out the updated list here.

We would love to hear from you - where were you treated?

HH Facebook Groups Building COMMUNITY

Founded by HH Patient & Super Advocate Megan Kramer, who frequently partners with Hope for HH

Did you know one study found as many as 14% of HH patients have LGS too. Appreciate the work the LGS Foundation is doing!

Appreciation to Joan Lrn who manages the French based L'ESPOIR: Hematome Hypthalamique France and shares HH info in French.

We confess - we proudly troll other HH facebook pages and are grateful to those pages below who help build community for HH patients and caregivers. A few topics (and replies from the community at large) currently trending on these sites include:

How many HHers are lefties?

Did anyone switch hand dominance post surgery?

Did laser ablation impact memory and/or mood?

Did you change your diet before or after laser surgery?

Do you let kids with HH & seizures ride bikes?

Got questions or observations? Post them to Hope for HH FB too.

Giving THANKS to Dedicated Volunteers

Hope for HH is grateful to volunteers Traci and Diane

for years of volunteering with Hope for HH.

Interested in joining our dynamic team? Click here .

Raising Money & HOPE!

Also, thanks to Virginia Newman Hunter, Julie Robinson, Nicole Lawrence Owens and Cadie Olmsted for celebrating birthdays, anniversary's and more by raising funds for Hope for HH. Organize a hoperaiser - get started here!

HH Awareness MARCHES On!

National Epilepsy Walk

Washington DC

Team HH plus Ellen Riker (NAEC) & Dr. Jaqueline French

2 stories plus

shout out to 4.7 M viewers for HH, Focused Ultrasound and Dr. Travis Tierney on Grey's Anatomy

UVA operates on its first HH patient using FUS.UVA continues to recruit participants ages 18 to 80 here.

Hope for Hypothalamic Hamartomas

email us| hopeforhh.org | Board of Directors | Medical Advisory Board

Provides information and support to HH patients, caregivers, and healthcare providers and promotes research toward early detection, improved treatments, living with HH, and cure.

DO YOU GET IT ALL?