Hope for Hypothalamic Hamartomas

“Description AmountGrant monies returned 37,591Grant given in 2022 for research, hypothesis was not viable so research was ended and the remaining grant monies were returned.”

“Activity Research Grantee University of Illinois Street 405 N Mathews Ave City, State, Zip Urbana, IL 61801Relationship None Amount 15,000Activity Research Grantee Institut de Cerveau Street 47 Boulevard de Ihopital City, Province, Country, Postal Paris, France 75013Relationship None Amount 24,750”

“Description AmountBank Fees 585Dues & Subscriptions 7,156Marketing / Website 4,141Insurance 1,477Miscellaneous 253State Filling Fee 3,483Supplies 459Travel 8,072Conferences 3,623Comorbidity 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 isolation. Hope for HH organizes various support options for families which are designed to bring together disparate patients and caregivers from around the globe for information, networking, and community. Hope for HH attends various conferences to meet and invite the foremost HH experts to present the most up to date research on treatments, comorbidities, best care practices and daily living challenges. Family information sessions are recorded so the content can be broadly disseminated to serve the international audience. In addition to information sessions, Hope for HH staffs information and referral service to answer questions, provide referrals, and offer support to newly diagnosed patients as well as those living with and managing the disease over the course of their lifetime. Moreover, Hope for HH maintains an in-depth website, blog, monthly electronic newsletter, daily social media channels, and downloadable print materials on many topics from questions to ask a Neurosurgeon through to A Seizure Action plan - all to ensure the widespread availability of information and suport for patients and their families. Patients preparing for surgery at two of the centers with the largest volume of surgical patients will also receive a comfort care bag filled with comfort items for the patients and caregivers.”

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