November Newsletter - Resilient and Resolved!

Hope For Hypothalamic Hamartomas - November 2020

Reflecting on 2020

The year 2020 has presented some very unique challenges for all of us. We have had to learn new ways to stay connected with friends and family, educating our kids, "going to work", meeting with our medical teams, and the list goes on. But we have adapted, we have persevered and we've proven that we can overcome adversity as individuals, as friends, as families and as a community.

Although many nonprofits have had to close their doors or drastically reduce their services due to the impact of Covid-19, Hope For HH has been able to move forward with minimal impact to our community support and 2020 initiatives. We know that we owe the successes of 2020 to you, our Hope For HH Community, and our international Medical Advisory Board. Some of the highlights of 2020 include:

Celebrated the 1st International HH Awareness Month/Day in September
Raised over $32,000 during during International HH Awareness Month
Strengthened our relationships with other international organizations focused on rare disorders and syndromes
Spread awareness through participating at multiple internationals medical conferences
Making advances in tissues availability for specific HH genetic research
Expanding the Hope For HH Surgical Care Bag program to Seattle Children's Hospital
Drafting Clinical Recommendations, across all identified HH comorbidities, to help healthcare professionals expedite diagnosis, appropriate testing and care throughout life for HH patients

How will you give HOPE this #GivingTuesday?

Our Growing International Collaborations

European Conference on Rare Diseases - ECRD2020

The European Conference on Rare Diseases & Orphan Products (ECRD) is recognized globally as the largest, patient-led rare disease event and we were honored to collaborate with our valued partners, Eurordis and EpiCARE, with two poster presentations. Click images to view and download posters.

Endocrine Society Annual Conference - ENDO 2020

We partnered with Dr. Kevin Yuen, Dr. John F. Kerrigan and Dr. Oliver Oatman from Barrow Neurological Institute for our first poster based on the data collected in the HH Comorbidity Survey. This endocrine focused poster was presented at ENDO 2020. Click image to view and download the poster.

European Reference Network / EpiCARE

Through our partnership with we've developed several downloadable resources for patients, caregivers and clinicians. These resources provide a comprehensive summary describing the main features of hypothalamic hamartomas for the benefit of the non-medical patient, and for the medical professional who may not be fully-versed in this rare and often difficult to diagnose epileptic disorder. We'd like to also thank the Hope for HH international Medical Advisory Board members for their contribution to these resources. Click images to view and download the resources.

2020 Memories of Hope