The Nathan Asher Foundation (NAF), a Non-Profit organization, is a patient advocacy organization dedicated to children with rare diseases and the stakeholders that serve them. NAF is committed to the identification of funding sources and the acquisition of funds to aid in the treatment of children with rare disease as well as providing support and empowering stakeholders programs of education, advocacy and research.
The Foundation was birthed from the experience of Nathan Asher Ellis a toddler who was diagnosed with a rare liver disease when he was 13 months old. The journey towards giving him a second chance at life and obtaining his lifeand obtaining his life saving liver surgery was achieved through the outpouring of love and support from the local, regional, national and international communities. The experience, opened the eyes of Nathan’s family to the real financial, emotional and other struggles that families/caregivers of children with rare disease undergo and the challenges that the children themselves can face. The question arose, “how can we assist other children with rare diseases in getting their chance at life?” Hence the formation of the foundation.
Major functions of the foundation include:
- Sourcing resources through fundraising to assist children with rare disease.
- Hosting educational sessions, workshops and conferences to raise awareness and empower those who have to care for children with rare disease.
- Providing group and individual support sessions to bring the gift of hope and happiness to these children and their families.
- Linking with possible donors to provide assistance to affected children who may not have insurance and who do not qualify for government-aid.
- Fostering a healthy and robust rare disease research environment.
- Establishing a registry for children with rare disease to facilitate coordination of support.
- Advocating for and influencing relevant policies.