Noah’s Never Ending Rainbow is a 501(c)(3) non-profit charitable organization developed in memory of Noah Thomas Campbell who died of Trisomy, specifically partial Trisomy of 2p+ (one of the rarer forms of Trisomy), at the age of 7 months old.Noah left a profound impact on everyone that was fortunate enough to get to meet him in his limited stay on this earth and he expects to continue leaving an impact on many more people in the years to come. Noah’s life continues through his family and this organization begun in his honor.
Noah’s Never Ending Rainbow is focusing its efforts on (3) three major objectives:
- Raise funds to support the operation of Noah’s Never Ending Rainbow, provide funding for research and education of Trisomy and assist individual families who have children with Trisomy and related chromosome disorders.
- Develop programs that educate medical health professionals, parents of children with Trisomy and the general public. These educational programs will be provided at no charge. As a result of current and future research, Noah’s Never Ending Rainbow intends to create materials, literature and workshops/seminars/conferences to educate the medical health professionals, and parents, so they have accurate and current information about Trisomy. This work will also involve coordinating Noah’s Never Ending Rainbow work with already existing Trisomy organizations, foundations and support groups so that constant and accurate information is made available. Some of the more specific activities will include the following:
- Develop educational programs, materials and literature that will be focused on physicians, geneticists, genetic counselors, nurses, social workers and other related health professionals.
- Develop an educational brochure in layman terms for parents and the general public.
- Develop a website that links parents to medical information, services and financial resources.
- Develop and implement perinatal, neonatal and pediatric hospice programs in and/or out of hospitals that will provide medical, emotional and spiritual support to families that have received a diagnosis of Trisomy in their child.
- Provide programs for Trisomy families, such as a “retreat” for families that have lost a child to Trisomy and educational workshops/seminars/conferences.
- Develop a “Medical Advisory Board” that can educate medical, insurance, pharmaceutical and medical equipment/supply organizations in the United States.
- Support the research of Trisomy and related chromosome disorders. Noah’s Never Ending Rainbow’s current intent is to provide grants to tax exempt educational institutions to conduct medical research in connection to Trisomy and related chromosome disorders, although it is possible that other entities or individuals may also qualify for research funds. Noah’s Never Ending Rainbow will provide information to various organizations and develop a “Request for Proposal” (RFP) process that will enable these organizations to apply for funds to conduct research of Trisomy. Some of the research to be funded may include the following:
- Prevalence of Trisomy.
- Rates and survival of children with Trisomy.
- Diagnosis of Trisomy.
- Phenotype and natural history of Trisomy.
- Human Genome Project and related genetic research.