2024-02-01T14:51:44-05:00 2023-06-30 453994464 Barbara Cugini CPA PA 7621 McMullen St Boise ID 83709 990EZ 2022-07-01 271433464 Hope for Hypothalamic Hamartomas HOPE PO Box 941 Eagle ID 83616 Kimberly Ranson Treasurer 2089491519 2023-11-15 false Kimberly Ranson Barbara Cugini P00391391 2089491519 2024-02-01 0 00 AAL2 IAL1 2022 2023-04-26 12:10:37Z X hopeforhh.org X X 45220 X 45191 29 45220 1747 259 58354 60360 -15140 354838 339698 354838 339698 0 0 0 0 354838 339698 0 0 354838 339698 X See Schedule O Organizes a biennial Family Forum designed to bring together disparate patients and caregivers from around the globe for information, networking and community.See Sch O 10273 Hope for HH coordinates a triennial International Reseach Symposium to provide an opportunity for otherwise disparately located HH experts, researchers See Sch O 33275 Comorbidity Survey is research data gathered for internal analysis by medical advisory board 1071 44619 Erica Webster President 30.00 0 0 0 Lisa Dunn Soeby Vice President 30.00 0 0 0 Kimberly Ranson Treasurer 3.00 0 0 0 Emma Kane Board Member 12.00 0 0 0 Kathy Jensen Board Member 15.00 0 0 0 X false false false false false false false false false UT RI NY NC MD The Company PO Box 941 Eagle ID 83616 6233637834 false false false false false false false false false false false NONE NONE true X 156646 81554 76633 139780 45191 499804 156646 81554 76633 139780 45191 499804 1201 498603 36 46 26 27 29 164 499968 0.99730 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED Description of other expenses Part I line 16 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 Part III response or note to any other line in Part III 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. Part V response or note to any other line in Part V Line 41 - Other states a copy of the tax return was filed in. Kansas, Illinois, Georgia, Florida, California, and Alabama.