NEURO CHALLENGE FOUNDATION INC
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Mission Statement
The mission of Neuro Challenge Foundation for Parkinson's is to improve the quality of life of people with Parkinson's disease and their caregivers today.
About This Cause
Neuro Challenge Foundation for Parkinson’s was founded by neurologist Dr. Dean Sutherland and his wife Doreen. Dr. Sutherland realized that his patients with Parkinson’s disease and their caregivers needed ongoing education, information and support that was more than could be provided during routine appointments. Dr. and Mrs. Sutherland recognized that by creating a charitable endeavor, the region would have the opportunity to offer patient-centered rather than profit-centered resources to people with PD and their caregivers in their communities. NCF became a registered 501(c)(3) organization in 2008 with the mission to improve the quality of life of people with Parkinson’s and their caregivers today. All Neuro Challenge programs, services and personalized care advising, including virtual and community-based education, therapeutic and support programs are offered at no cost to people with Parkinson's disease and their loved ones. NCF operates from an administrative office in Sarasota and three satellite offices in North Port, Bradenton and Sarasota, Florida to provide individualized care advising in Manatee, Sarasota, Pinellas, Highlands, Marion and Charlotte counties. Neuro Challenge facilitates more than 50 monthly virtual and community-based education, therapeutic and support programs, the Parkinson’s Symposium, Distinguished Speaker Series and The Parkinson’s Expo, the largest event of its kind in the nation, held annually at the Manatee County Convention Center. Care Advising: A diagnosis of PD can be overwhelming as is the amount of information available on the internet that often leaves a person asking, “What information do I need to help me or my family, starting today?” The NCF Care Advisor encourages people with PD to focus on the things they can do today to best manage their symptoms and what therapies and services can be most useful. They connect families living with PD with community resources that can help them live optimally at each stage of their disease. Education Programs: NCF monthly education programs provide information on both motor and non-motor symptoms of PD and the most up to date treatments available, both medical and non-medical. These programs can include speakers who are PD experts in the areas of medication management, therapy options, nutrition, exercise and non-motor aspects of the disease including but not limited to anxiety, depression and dementia, and the emotional and physical strain on the caregiver. Support Groups: A diagnosis of PD can bring with it a wide range of emotions at ever-changing levels of intensity. It is important for people with PD and caregivers to know that they are not alone in their journey. A strong community can help those with PD and their caregivers address the immediate and long-term emotional impact of a PD diagnosis. Many people prefer not to talk about their PD but those who are able to discuss it openly report the process to be therapeutic. A PD diagnosis rarely affects just one person and the condition can be difficult for immediate family and friends. It is important for those who have the disease to recognize that while the physical symptoms may be theirs and theirs alone, the emotional repercussions can be much more widespread. Communication ensures that information is shared with everyone involved, and misunderstandings are kept to the minimum. Sharing the burden of PD is therapeutic for all concerned. All NCF programs and services are delivered by a trained Care Advisor and supported with direction from Neuro Challenge CEO Robyn Faucy-Washington and Program Director Kristin Lessig-Schenerlein. Members of NCF’s volunteer Medical Advisory Committee provides material and serve as speakers for the educational and therapeutic programs. Necessity: There are approximately 12,000 people diagnosed with PD in the region and many more who remain undiagnosed or misdiagnosed. The number of people with PD is expected to increase as the population ages and more Americans take up residence on the Gulf Coast. People diagnosed with PD and their caregivers often have questions about the practical aspects of living with disease that often go unanswered. Most people with PD and caregivers are unaware of local resources from which they can benefit. NCF Care Advisors connect individuals with community resources that can help them live optimally at each stage of their disease. Community resources include but not limited to Manatee County community-based NCF programs, physical therapists, voice coaches, nutritionists, fitness experts, social workers as well as arts and cultural organizations and virtual Neuro Challenge programs. The burden of chronic conditions is projected to grow substantially over the next few decades as the size of the elderly population grows. Such projections give impetus to the need for innovative new treatments to prevent or delay symptoms and community-based programs that help alleviate symptoms of PD. (The number of people with PD worldwide is expected to double by 2040 according to the Michael J. Fox Foundation.) The demand for neurology services is increasingly outpacing the supply of clinicians who can provide them. As baby boomers age, the number of people affected by neurological conditions grows. There is an existing shortage of neurologists worldwide and according to the American Academy of Neurology the shortfall will grow to 19% by 2025. In the places where we live, many of us are surrounded by essential ingredients in a healthy life, such as adequate housing and public transportation, quality health care and safe places to exercise and play. Unfortunately, for many others, these options are either too far away or economically out of reach, creating major obstacles in the pursuit of better health and quality of life. A person of low or moderate income may not seek support services because they simply cannot afford the long-term costs. Caring for a loved one with PD can be a challenging job, especially as the disease progresses. Making sure that caregivers stay healthy and avoid burnout is critical. Elderly caregivers who experience caregiving-related stress have a 63% higher mortality rate than non-caregivers of the same age. (www.caregiver.org/caregiver-health). As PD progresses, the roles change and the person with PD may go from being an independent head of household to a very dependent person requiring a significant level of care. NCF offers programs for caregivers to answer questions about PD, the stages of the disease and what to expect. Caregivers meet people who are going through similar situations, discuss frustrations, give and receive mutual support, exchange resource information and learn coping strategies. With a Neuro Challenge support network, caregivers have more confidence in their ability to care for their loved one. An estimated 40% percent of people with PD in the U.S. do not see a neurologist and the number is far greater for low and moderate-income families. Persons of low income face additional barriers to gaining access to care and services: (1) lack of knowledge, especially about non-profits and the ways they can help (2) “survival fatigue” or an inability to access all sources of help because of the stress and stigma of living with scarcity and (3) psychological barriers, specifically stigma and loss of pride for not being able to care for one’s self. Those who cannot overcome these barriers to get the help they need experience escalating hardship and poverty. (https://www.pvertycenter.columbia.edu) Purpose The purpose of Neuro Challenge services and programs is to improve the quality of life of for people with PD and caregivers today. The average age of onset for PD is 60 and persons with PD live between 20 and 30 years after diagnosis. NCF programs help people with PD to better cope with the challenges of living and aging with PD and to prepare for their long-term care. Having difficulty moving and the inability to speak loudly and clearly are barriers for people with PD to even go out in public. The fact that they cannot hide their disease makes them uncomfortable, partly because it makes the rest of humanity uncomfortable. These symptoms often lead to isolation and depression. Shame often emerges from PD motor and non-motor symptoms, as well as, a self-perception of inadequacy due to increasing loss of autonomy and need for help, and from the deterioration of body image. Shame can have a significant negative impact on health-related quality of life. It may contribute to anxiety, social isolation and depression. NCF creates a community or nontraditional setting where people with PD feel safe and are more comfortable learning and sharing with others on the same journey. NCF programs empower people with PD to live with determination and hope for the future in a supportive community. The cost of illness escalates as PD progresses, placing an economic burden on the healthcare system, society and patients themselves. If the physical, emotional and psychological needs of low to moderate-low people with PD are not addressed through the services of NCF, then they will most likely be served through indigent care programs at the local hospital, which may be funded through taxes. With support from the Lakewood Ranch Community Foundation, NCF will continue to provide ongoing support and information to people with PD and their caregivers at no cost. NCF is committed to continuing our relentless efforts to help people with PD and their caregivers in Manatee County have a better understanding of and develop a better approach to living well with PD. No other non-profit organization offers no-cost community-based services, care advising, resource referrals and virtual education, therapeutic and support programs for people with PD and their caregivers.