Lucas John Foundation is a nonprofit organization focused on rare diseases. Lucas John Culp was born in 2018 and medically diagnosed with a very rare genetic condition, Non-ketotic hyperglycinemia (NKH). There are only approximately 500 cases in the world. NKH is considered an orphaned disease. Orphaned diseases do not receive government funding and research is solely funded by the families affected and their supporters.
Our focus is to help families diagnosed with a rare or medically complex condition to find viable medical solutions with conventional and alternative therapies improving quality of life while providing financial and emotional support. Our goal as a foundation is to improve the standards of care and be an advocate for inclusion, so no child is left behind. Access to equal, quality care should be a global goal for all affected by rare diseases.
Our passion is to provide support for all families encountering unimaginable medical issues. When faced with these health challenges we help them look for solutions that can help. Providing access to up-to-date research, alternative treatments, technology, and social support.
Current Funding Focus:
- Research funding for RARE diseases
- Research funding for gene therapy for NKH
- Research funding for mRNA technology for rare diseases
- Advocacy for higher standards of care
- Advocate for inclusive policies for treatment and therapy for all
- Fund for DNA testing for parents and family members
- Postpartum care kits for moms during the NICU stay
- NICU care kits and support contact information for parents
- Create a fund for express labs for families
- Budget for scholarships alternative therapies
- Funding for newborn movement assessment subscriptions
Lucas John Foundation is registered with the IRS as 501(c)3 (ID: 83-3683882) tax-exempt status. AZ Nonprofit corporation was established, January 19, 2019.