Hope for Hypothalamic Hamartomas

“Description AmountBank Fees 272Dues & Subscriptions 4,587Marketing / Website 3,657Insurance 1,401Miscellaneous 566State Filling Fee 3,251Surgical Gift Bags 524Patient Webinar 500Conferences 42,525Comorbidity Survey 1,071”

“Primary Exempt Purpose - To provide information, suport and community to Hypothalamic Hamartomas (HH) patients, caregivers and healthcare providers. We promote research into early detection, improved treatments, living with HH as a complex medical syndrome, and cure. Part III Line 28 We invite the foremost HH experts to present the most up-to-date research on treatments, comorbidities, best care practices and daily living challenges. Given the rarity of the disease and how dispersed families are, for many patients, this is the only time they will meet another HH patient and caregiver. We also award financial aid for travel to the Family Forum and videorecorded sessions to ensure wide-spread access. We staff information and referral services, an in-depth web site, blog, newsletter, social media channel and downloadable print materials to support patients and their families. Patients facing surgury receive a comfort care bag filled with a variety of comfort items. Part III, Line 29 and clinicians to exchange information, share best practices, identify gaps, seed collaborations and develop a roadmap to improve diagnosis, treatment, management and cure. The inaugural meeting was in Marseille France in 2013 and has been convened every 3 years since including London (2016), Washington DC (2019) and Alberta Canada (2022). The meeting began with 35 HH experts and has grown to include more than 60 HH experts and epilepsy thought leaders across 11 countries, 25 institutions and many subspecialties including neurosurgery, neurology, endocrinology, radiology, neuropsychology, genetics, basic research, and epidemiology.”

“Line 41 - Other states a copy of the tax return was filed in. Kansas, Illinois, Georgia, Florida, California, and Alabama.”