2016 is underway. BIG NEWS from Hope for Hypothalamic Hamartomas is the relaunch of our website . We hope you will visit the NEW website and share your feedback. Shout out to Lisa Soeby & Erica Webster for their valiant efforts on this enormous undertaking! Note: it is a work in progress - so bare with us as we work out any kinks. 

Got web, database, blog, social media or fundraising skills? Or perhaps you have a little extra time? We could sure use some more volunteers to join our small but mighty crew. We would love to set up a call to explore your interests. Contact Lisa if you are interested. 

As you will see from the update below - 2016 offers new hope in research, treatment, community and awareness. How will you get involved? 

Warmly,
Hope for HH Board of Directors

Walking & Running Strong for HH in DC, Boston & Around the World!
Thanks to all of those patients and caregivers plus their extensive friends and family who walked for HH in DC and around the world braving snow, cold, heat and more!



Huge thanks to marathon runner Jason Dunklee, running4rare.org , & National Organization for Rare Disorders (NORD) who ran the 2016 Boston Marathon in memory of Grace Webster to raise awareness of Hypothalamic Hamartomas. Jason finished 64 for his age group - we are super impressed and grateful!

Worried About Low Tone? Weight? Rages?
HH patients and caregivers are truly THE BEST. You continue to sign up for the Rare Epilepsy Network. And when we see discussions on the facebook pages about low tone, escalating weight, precocious puberty, sleepless nights, IEPS, ADHD, anxiety, rages, aggression, and so much more - it reinforces why we desperately need a registry to identify common problems and get answers!

For those who have not yet joined - the Rare Epilepsy Network is simply a database where all patients and caregivers can input all of this information. Then researchers can access the information to identify patterns. Do you want to know if the side effects you or your child are experiencing are unique to your HH loved one or common to all? A registry is the key that consolidates critical information so it can be translated into research and interventions.  So once again -  PLEASE sign up for the REN TODAY Need help? We are standing by to help you - contact us here . Hope for HH was featured in the REN Newsletter. Check it out here
Do You Know What SUDEP is?
Sudden Unexpected Death In Epilepsy or SUDEP is a risk for all  families
with epilepsy.  
More information here.

Y et all too often families are not aware of the risk factors for SUDEP or best practices to prevent it.  Join together with patients and professionals to learn how we can all work
together to prevent another loss of life to  epilepsy,
June 23-26 in Washington, DC. A few spaces are still open including one day options only.

Sign Up  here

Shop Amazon & Reward Hope for HH
Are you a regular on Amazon? Register on amazon smile, select Hope for HH and we will receive .5% of the price of all eligible purchases. It all adds up to more money for Hope!

Hope for Hypothalamic Hamartomas 

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

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