Hope for Hypothalamic Hamartomas drives education, support and research in this complex syndrome. We focus our efforts and funding on early detection, improved treatments, and managing HH as a complex medical syndrome with the goal of one day finding a cure.

Goals

  • Provide Information and Education to HH patients, caregivers, and healthcare providers
  • Support HH patients and caregivers
  • Fund Research toward early detection, improved treatments, and managing HH as a complex medical syndrome
  • Increase Awareness of HH, seizures, co-morbidities and Hope for HH
  • Fund programs, services, and research
  • Operate 501c3 legally, effectively and efficiently
  • Increase Community Engagement across all programs and initiatives

Organizational Cornerstones

Information and Education

  • Maintain up to date information across multiple information platforms including: website, blog, social media, newsletter
  • Serve 3 constituencies: patients, caregivers and professionals
  • Ensure patients have access to up to date information on HH diagnosis, treatment, research, epilepsy and comorbidities
  • Educate health professionals to expedite correct diagnosis and appropriate care

Support

  • Answer requests for support and offer additional resources as needed
  • Provide information to families as they progress through their HH journey
  • Empower patients and caregivers to seek better treatments and quality of life
  • Provide opportunities to meet/engage others and share experiences and knowledge through hosted events

Research

  • Advocate for and fund cutting edge research to advance our understanding of HH and improve quality of life over the lifespan
  • Maintain and direct an advisory board of medical experts across subspecialty areas
  • Ensure grants are reviewed and managed with integrity
  • Facilitate and seed research collaborations
  • Actively pursue and leverage other research sources
  • Stay current on HH and associated comorbidities by attending and participating in key conferences
  • Inform patients of research studies and clinical trials

Awareness

  • Raise awareness of Hope for HH and build partnerships with other strategic organizations
  • Increase knowledge of HH worldwide by encouraging the HH community to share their stories and engage with their local community

Fundraising

  • Raise funds to execute programs, services and fund innovative research
  • Ensure long-term health and sustainability of organization
  • Support individuals and families who are interested in hosting fundraising events on behalf of the organization
  • Identify corporate sponsors, individual donors, family foundations and general supporters; cultivate these prospects growing engagement and revenue across each fundraising channel
  • Foster relationships with health systems, medical community and local community partners along with program team to garner financial and collaborative support

Operational

  • Equitably divide responsibilities across Board and Committees
  • Actively recruit consultants and volunteers based on skills needed for execution of strategic plans
  • Establish best practices for organization
  • Develop succession/sustainability plans
  • Cultivate and support Board members
  • Engage consultants/professionals as required
  • Operate All Volunteer Organization (AVO) 501c3 legally, effectively and efficiently