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 Aicardi-Goutieres Syndrome, a very rare form of Leukodystrophy. All officers and board members serve as volunteers, and the majority of our proceeds go towards meeting our program 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!
“Our mission is to provide the tools for a therapeutic and fun experience to children with physical and developmental needs.”
The M.O.R.G.A.N. Project is a national, community-based organization of volunteers dedicated to promoting awareness and facilitating support of parents caring for their children with special health care needs, thereby enhancing the Quality-of-Life for these special families.
The M.O.R.G.A.N. Project’s Quality of Life support programs for children with disabilities have been designed around one very simple value: to make the parents’ job of caring for their own special-needs child in the family home just a little bit easier.
In addition to providing guidance, resources and gently used disability equipment free of charge to these families, the organization has recently created a new therapeutic/recreational option for families in Brevard and surrounding counties that focuses directly on the sensory functions of their child with special health care needs – designed just for children with physical disabilities and/or sensory processing disorders.
Furnished with all the items necessary for inclusive therapeutic play and sensory stimulation, Morgan’s Place is home to our unique, state-of-the-art Sensorium, Jungle Vestibular Room, Technology Zone and iAccessibility Corner, as well as our new Garden Sensorium and LifeStyle Pavilion. Based on Snoezelen principals of multi-sensory environment protocols, it is completely wheelchair accessible and 100% wirelessly controlled.
For a brief moment in time, these children that have no control whatsoever in their lives can choose what they want to do – choose the colors, the sounds, the vibrations, the smells and the activities that they desire – that we all take for granted!
Over the years our goals for this organization have gradually changed, based solely on our own experiences of caring for our own chronically ill child with very involved special needs. Our original vision has not changed; it has just evolved to accommodate the additional needs and obstacles we have faced as our son has gone from an infant to a grade-schooler to a teenager. As a result, our Quality-of-Life support programs have been designed around one very simple value: to make their job of caring for their own special-needs child in the family home just a little bit easier.
Since 2001, our all-volunteer team has responded to thousands of letters and email inquiries from parents of children with special health care needs seeking support. We have been able to direct many to resources that they were not aware of, resources that we have researched and catalogued over the past 19+ years and have now compiled into an extensive database. These resources are constantly updated, and may be downloaded off of our website.
We have responded to many hundreds of requests for pediatric adaptive and positional equipment through our Pediatric Disability Equipment Exchange Program that was instituted in early 2006. Through this program we have successfully matched donated items from families that no longer have a use for these items with families that have a demonstrated need. The M.O.R.G.A.N. Project provides the shipping of donated equipment from the donor and to the recipient at no cost to the families, and provides a tax receipt for the donations. Typical items processed through this program include bath chairs, gait trainers, walkers, car seats, feeder chairs, lightweight adaptive strollers and various medical supplies.
Quality of Life Enhancement Program
In late 2007 we began our QOL Award Program, offering families that meet our minimum criteria the opportunity to apply for the “tools” that make their job of caring for their child easier AND enhance quality of life for the child and family at the same time. These “tools” are for things that are not considered medically necessary by insurance and Medicaid, but that can make a huge impact on the parent’s ability to be the safest caregiver and best advocate for their child that they can be. This program varies from year to year based on available funding, but has previously included providing bath chairs, car seats, lightweight portable adaptive strollers, positional seating devices, switch activated toys, vestibular stimulation, and similar items to children under the age of 18 with lifetime physical disabilities. We have also offered a limited number of families with financial assistance to help offset the cost to attend family oriented, disease-specific medical support group conferences for the first time, in order to network with other families in the same situation. Due to limited funding, this program is currently on hiatus while under review and not accepting requests at this time.
The M.O.R.G.A.N. Project has identified caregiver support as a high priority. As a result, we have created “Parenting a Child with Special Needs”, a basic informational pamphlet for parents who have just learned that they will be lifetime caregivers for their child with special health care needs. This pamphlet is given to parents at no cost, and offers guidance to plan and coordinate care for their child. It offers our Top 10 tips as to where to start on their new journey, along with some of the most important resources they will need as they begin. Please email us and we will send it to you!
Opened in 2012, The M.O.R.G.A.N. Project has established a facility named Morgan’s Place, located in Melbourne, Florida. This unique center is now home to all of our Quality-of-life support programs, as well as offering information on other community disability resources and services. Additionally, we offer caregiver and advocacy training, seminars on the various issues related to caring for children with special needs, navigating the medical and emotional hurdles, finding financial assistance, caregiver support, legislative issues, etc.
Morgan’s Place is not a drop-off center; it has been designed to provide a safe environment that has been created specifically to meet the needs of children with physical disabilities and/or various sensory processing disorders (Autism, etc.) and that will enable those with limited physical abilities to enjoy healthy activities regardless of their limitations.and physical disabilities for hands-on therapeutic play, as well as creative and fun activities. Our goal is to offer an alternative to outdoor inaccessible playgrounds, “McDonald’s” or “Chucky-Cheese” type play areas, “Mommy & Me” toddler playgroups, libraries, and other similar places or support groups that unfortunately are not appropriate for the physically disabled child with special health care needs. Morgan’s Place was built to create a boundary-free environment specifically designed for their special-needs and 100% wirelessly activated so that everyone can enjoy the freedom of choice and explore their senses!
Based on “Snoezelen Multi-Sensory Environment” principles, we have created a one-of-a-kind non-threatening dedicated space designed to promote intellectual activity, heighten awareness, and encourage relaxation. Designed by the Christopher Douglas Hidden Angel Foundation, this room has been engineered to bring together state-of-the-art multi-sensory equipment to stimulate the sensory pathways of touch, taste, sight, sound, smell, and movement without the need for intellectual reasoning. A demand-free environment where you can select and experience sensory stimulation, it can produce a calming effect on individuals prone to frustration, or stimulate passive individuals who appear withdrawn. Ideal for those with profound disabilities who have limited access to multi-sensory stimulation on their own, or those who may have sensory processing challenges and need varying stimulation in order to process self-regulation, the desired results are to promote development, improve their capability to communicate, and positively affect their behavior. Our Sensorium also benefits those without disabilities where multi-sensory stimulation and experiencing the environment can be a basis for relaxation. This enriched environment encourages learning and improves the participant’s quality of life.
Designed to enable children with physical and cognitive challenges to access special education software on touch-screen tablets and touch-smart computers with or without the use of adaptive controllers and devices, our technology zone is also equipped with a video game system and oversized HDTV/monitor for both educational and recreational video gaming. We also offer sporting teams for children with special needs utilizing the Wii bowling, golf and tennis programs. In addition, our assistive technology computer lab and resource library provides parent caregivers with the tools they need to locate information and services that would benefit their children, as well as the support and services that would benefit their own needs. The newest addition to our state-of-the-art technology zone is the Smart Table 442i, that enables up to 8 children at a time to interact utilizing one of over 2500 educationally based games and activities!
Soft Play Jungle Vestibular Room
Our Soft Play Vestibular Gym offers accessible movement and exercise activities. Children with special needs have different abilities than typically developing children, but still need to have a safe place for socialization, exercise and educational opportunities, so this room allows children to be as creative and boundless as possible, utilizing an overhead swing system, soft-play furniture and toys, as well as music and lights to experience their senses in a tactile friendly environment. This room is completely padded and barrier free.
Inspired by the success of our indoor Sensorium we have taken the sensory experience outdoors! Our new Garden Sensorium includes a Sensory Garden and Interactive Sensory Stations adjacent to our facility, including areas for water and sand play, a large gazebo with butterfly enclosure – all with various activities that stimulate the senses of sight, sound, smell , touch, taste and movement – as well as a wheelchair accessible swing area. Perfect place to hold that birthday party for your child with special needs or other special event!
Please consider helping us!
OUR HISTORY, VISION & RECOGNITIONS
The M.O.R.G.A.N. Project is looking to expand our programs! We need sponsors and donors to help us continue and expand, as well as volunteers to help us do it! Please call Kristen at 321-506-2707 for sponsorship information.
The M.O.R.G.A.N. Project, Inc.
EIN # 59-3744749
Incorporated in the State of Florida, August 2001
Federal Tax Exempt 501(c)(3) Organization
IRS 501(C)(3) Official Letter