About Noah's Never Ending Rainbow
Our Objectives
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.
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