The M.O.R.G.A.N. Project | The Leukodystrophy Alliance ™

The M.O.R.G.A.N. Project

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Visit The M.O.R.G.A.N. Project website

The M.O.R.G.A.N. Project is a 501(c)(3) non-profit organization, established by Robert & Kristen Malfara in honor of their precious son Morgan, who has a very rare form of Leukodystrophy. All officers and board members serve as volunteers, and because we do not use our charitable contributions for salaries, 100% of our proceeds go towards meeting our goals.

Robert & Kristen feel honored to have been chosen to be the loving and caring parents of this very special, heaven-sent child. But most importantly, they also feel that it is their privilege to do so.

First and foremost, we must recognize that it takes a special person/parent to take on the responsibilities of caring for a special-needs child, whether your own child, a foster child, or adopted child.  However, it takes an extremely exceptional person/parent to recognize that it is our privilege, not just our obligation, to be loving caretakers to these very special Heaven-sent angels, and make their lives as rewarding and comfortable as possible.  The M.O.R.G.A.N. Project was established to help these amazing people do just that!  Working together to promote awareness and support of parents caring for their special-needs children, and to enhance the quality of life for these special families.”

OUR VISION:

The M.O.R.G.A.N. Project will be will be the community’s premier knowledge resource and a recognized leader in providing parents with the tools and resources they need to properly and safely care for their child with special health care needs in the family home.

OUR MISSION:

The M.O.R.G.A.N. Project is a national, community-based organization of volunteers whose mission is to promote awareness and facilitate support of parents caring for their children with special health care needs, and to enhance the Quality-of-Life for these special families.

OUR ORGANIZATION:

Our organization (unlike many) is not disease-specific and has been lovingly created by our Founder, Mom to our inspiration and namesake, Morgan, who was diagnosed with an extremely rare neuromuscular disorder called Leukodystrophy at just 8 months old.  She created this organization to support and assist other families who are caring for their disabled child regardless of what the underlying disease or disability is. We provide small grants for equipment and medical conference expenses not otherwise covered by insurance or Medicaid. Our equipment loaner program allows parents to try expensive equipment before submitting a grant request to us to purchase it for their child.

The organization’s programs are the brainchild of an individual who has spent many years supporting the medically fragile community, and who has firsthand experience in the challenges faced by so many families of special-needs children. Specifically, she has become aware of the vast percentage of caregivers who find themselves in need of support in the forms of medical information and equipment. The organization’s mission is to provide support to parents and caregivers, and to act as a reference source for information, financial resources, used equipment exchanges, research and clinical studies, support groups, web links, and more. In order to achieve our mission, The M.O.R.G.A.N. Project has implemented programs which offer both access to necessary disability equipment and funding for products and services necessary to enhance the lives of medically fragile children. The organization will strive to ensure the future wellbeing and growth of clients by providing them with the resources necessary for future success. The organization’s efforts will be focused primarily on those who are economically disadvantaged, and will include many individuals who come from diverse backgrounds. The organization’s current programs provide gently used disability equipment as well as small grants for new disability equipment that enhance the Quality-of-Life for the special-needs child as well as  helping the parent to better care for their child at the same time.  Our new facility enhances and expands upon current programs and services to include on-site, Multi-Sensory therapeutic play for children with special health care needs.

 

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