TASK FORCE NEURO
BRINGING CAPABILITIES TOGETHER TO ENHANCE NEURO DISEASE CARE
Those impacted by neurodegenerative diseases deserve to have the best local care resources possible. The organizations, government agencies, and professionals responsible for providing these resources should maximize coordination and collaboration to enhance locally-based advocacy and capabilities. This is Task Force Neuro.
Please visit this section for important updates and happenings.
Updated August16th. Well it has been a month since our second annual Bear Town Paddle Battles. Over the past month, in the midst of our recovery period, we have been contacted by numerous people wanting to get involved with Task Force Neuro. The reception has been amazing and we have high hopes for the organization and the future. Our goal is to incorporate these additional people into our structure beginning this fall and start prioritizing our efforts for the next year. With that said, our first objective is to host the first "Task Force Neuro Quarterly" in the late fall. More will be announced at a later time, yet our quarterly conferences will be designed to bring together our Task Force Neuro partners in order to discuss the issues important to those dealing with neurodegenerative diseases/disorders. So please anticipate more news very soon!
ABOUT OUR SITE
The Task Force Neuro website is designed to, not only, provide information, yet also facilitate collaboration and operate as a location to coordinate efforts. Please scroll down to learn more about what we are all about. If you want to dive deeper into helping out, please go back to the top and check out our initiatives and ways to help. Additionally, to maximize involvement, consider becoming a site member. As a member, you can join our groups. These groups connect our volunteers, core team members, and our Task Force partners.
WHAT ARE NEURO-DEGENERATIVE DISEASES & DISORDERS?
Neurodegenerative diseases and disorders encompass a wide range of conditions that result from progressive damage to cells and nervous system connections that are essential for mobility, coordination, strength, sensation, and cognition. Degenerative nerve diseases affect many of your body's activities, such as balance, movement, talking, breathing, and heart function. Many of these diseases are genetic. Sometimes the cause is a medical condition such as alcoholism, a tumor, or a stroke. Other causes may include toxins, chemicals, and viruses. Sometimes the cause is unknown. Neurodegenerative diseases include ALS, Multiple Sclerosis, Parkinson's Disease, Alzheimer's Disease, Huntington's Disease, Multiple System Atrophy, Prion Diseases, and many others.
Neurodegenerative diseases affect millions of people worldwide. According to the Harvard NeuroDiscovery Center, within the United States alone, 5 million people suffer from Alzheimer's disease; 1 million from Parkinson's; 400,000 from multiple sclerosis (MS); 30,000 from amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease), and 30,000 from Huntington's disease. Because neurodegenerative diseases strike primarily in mid- to late-life, the incidence is expected to soar as the population ages. By 2030, as many as 1 in 5 Americans will be over the age of 65. If left unchecked 30 years from now, more than 12 million Americans will suffer from neurodegenerative diseases. Finding treatments and cures for neurodegenerative diseases is a goal of increasing urgency.
MOST COMMON NEURODEGENERATIVE DISEASES & DISORDERS IN THE UNITED STATES, BY THE NUMBERS
TYPICAL AGE OF ONSET FOR COMMON NEURO DISEASES
While this disease is most common over the age of 60, early-onset Alzheimer's can occur as young as 30.
Although it is most common after 41, 1 in 10 cases occur before the age of 40.
While most common around 20 and 40 years old, MS can strike at any age.
This devastating disease can strike at any age, although most common over 40.
HD can strike those as young as 2 years old in its' horrible juvenile form.
THE IMPACT OF A DIAGNOSIS
Neurodegenerative diseases, including ALS, Parkinson's, Alzheimer's and Huntington's Disease impact numerous families. Often, the diagnosis is unexpected and families are not prepared to deal with the complex dilemmas they will face. This may include adjusting their home, care giving, long term care, filing critical legal documents, and merely surviving financially.
Many of those impacted during their working years lack long term care insurance and the financial resources needed to pay for long term care needs. Parents and spouses often must take unpaid absences or leave work entirely to care for their loved ones. It becomes overwhelming for the entire family unit.
Due to government bureaucracy and a lack of policy change affiliated with neurodegenerative disease diagnoses, Social Security disability benefits may take up to two years to be approved, even for the sickest people. Those impacted by a neurodegenerative disease under the age of 55 often times are denied the same long term care capabilities provided to those over that age due to age-based discrimination as a result of a lack of licensing inspection and accountability. In many cases, the only long term care options are those designed for the mentally-ill. These diseases are not mental illnesses and the care needs are much different. Additionally, keeping a loved one at home is not always the best care option for the person or their family. Sadly, many of those diagnosed with these diseases don't make it to the age in which current care programs are made available.
Task Force Neuro is tackling the issues to improve adequate care capabilities within local communities and make them fair for all ages.
DON'T NEURODEGENERATIVE DISEASES & DISORDERS ONLY IMPACT "OLD PEOPLE"?
FALSE. The majority of neurodegenerative diseases and disorders can impact people at any age. This is even true for Alzheimer's and Parkinson's which routinely are identified as only impacting the older population.
ISN'T IT TRUE THAT THOSE INFLICTED WITH TERMINAL NEURODEGENERATIVE DISEASES ARE IMMEDIATELY APPROVED FOR SOCIAL SECURITY DISABILITY?
FALSE. Currently, the Social Security Administration does not utilize a list of terminal and progressive illnesses to prioritize any case. Thus, even with a clearly defined diagnosis of an incurable progressive disease that does not improve, many people are still denied benefits during their first attempt. This is often due to the fact that government case workers focus on paperwork discrepancies and poorly-written medical examination reports to deny cases. This leads to many sick people having to wait over two years to receive the benefits they paid in to while employed.
STAYING AT HOME IS ALWAYS THE BEST CHOICE FOR THOSE WITH NEURODEGENERATIVE DISEASES, RIGHT?
FALSE. Many organizations, including Disability Rights advocates, refuse to take cases that result in the "institutionalization" of someone disabled. While this may be a stance taken with good intent, it does not reflect the ground truth for all cases. When someone is in need of consistent care, the home place is not always ideal. Not all families can provide the best care for their loved one. This is especially true if children are turning into caregivers. In some circumstances, the emotional toll in the household can elevate the potential for elder abuse. While staying at home should always be the first course of action, there must be an understanding that other options may be needed. Staying at home as a precedence shouldn't be the goal, receiving the BEST care for your loved one should be.
AREN'T LONG TERM CARE RESOURCES READILY AVAILABLE FOR ALL AGES.
FALSE. The majority of assisted living communities and skilled nursing facilities will make every attempt to protect their demographic of older adults. While laws may clearly state a requirement for facilities with memory care units to admit those with neurodegenerative diseases, there is a lack of government inspection and accountability. Thus, the current probability of someone under the age of 55 being admitted into a quality community is low.
BUT THEY COULD JUST GO INTO A GROUP HOME. RIGHT?
FALSE. There is an assumption that those of a younger age needing long term care can simply go into a "Group Home". However, most group homes only support those with intellectual disabilities (from birth or severe trauma) or mental illnesses. Neurodegenerative diseases are not at all similar to these ailments.
SO ARE APPOINTED AND ELECTED OFFICIALS DOING SOMETHING ABOUT THIS?
NOT RIGHT NOW. This is not an issue that wins elections for politicians or attracts special interest money to support campaigns. While elected leaders have been contacted, there is no one standing up to fix these issues. Many of those within positions designed to provide long term care advocacy believe they only support the older population and those already in care communities. This leaves a massive advocacy gap for many people diagnosed with neurodegenerative diseases and disorders.
WHY WE DO THIS
Heather DeHaven was well aware of the impact that Huntington's Disease (HD) could have. She witnessed first-hand her grandfather, than mother, struggle with HD through her childhood years. HD was always what made her family different from others. Her mother started showing progressive HD symptoms when Heather was in elementary school. The memory of her mother healthy soon was out shadowed by years of disease progression.
Heather chose to live as normal of a life as she could. Like many who are at risk for HD, Heather made a decision to not seek genetic testing. While there is no right or wrong path to take, Heather chose to live free from being haunted by the disease as long as she could. She graduated high school towards the top of her class and completed college in 3 years with a Bachelor's Degree in International Studies. Her dream was to pursue a career serving others in need. While in college, Heather was an AmeriCorps volunteer, helping children from impoverished communities improve their reading skills.
After college, Heather went on to get married and have two wonderful children. While dedicated to her family, she also loved her work. As a Public Education Specialist for the Frederick County Fire Department in Winchester, Virginia, she adored speaking at elementary schools and special needs homes about the importance of fire safety. She worked hard to secure grants to install free fire extinguishers in the homes of those who could not afford them. Later on, Heather joined the Exceptional Family Member Program (EFMP) team at Marine Corps Air Station Cherry Point in North Carolina. She was passionate about helping Marines and their families impacted by devastating medical conditions. It was in this that Heather discovered her true passion, Social Work. She was well on her way towards completing a Masters of Social Work to become an EFMP counselor. However, around 2016, at 34, HD emerged. Heather began to display cognitive and physical symptoms consistent with the disease. A genetic test confirmed the diagnosis in 2017.
Over the past few years, Heather's life has changed drastically. The person who once dreamt of helping others must now be on the receiving end. Her family has been faced with the many complex issues encountered by those receiving a neurodegenerative disease diagnosis. During this journey, it became very apparent that the system is broken and in many cases, these people do not receive the care and resources they deserve. While Heather has lost her voice, her compassion and drive to help others will live on within Task Force Neuro. Heather is just one of many people who have faced unnecessary challenges while battling neurodegenerative diseases. Our mission is to improve the care of these wonderful people. We will do this until cures eliminate the need.
While each experience is uniquely different, our task force partners know all about the challenges associated with a neurodegenerative disease diagnosis. Many have first-hand experience with this difficult journey. With this knowledge, Task Force Neuro has three fundamental objectives:
1. Lead the advocacy effort in ensure our neighbors impacted by neurodegenerative diseases have adequate care capabilities and resources. We seek to identify and mitigate care gaps through our partnerships and coordination efforts.
2. Assist the impacted, and their families, with the creation of an effective and compassionate team designed to assist with all aspects of care management. Each person should be aligned with the appropriate organizations and services in a professional manner.
3. Sustain the ability to assist with medical-related home improvements, equipment, home health care, legal guidance, respite, and financial planning.
Established in 2016, the Neuromuscular Disease Support Organization, or NMDSO, was created by Sandi Sanderson after experiencing her close friend's battle with a neurodegenerative disease. NMDSO was created to assist individuals and families impacted by these devastating conditions. In 2021, NMDSO transformed into Task Force Neuro in order to align with a new mission to improve collaboration between organizations to enhance care capabilities in local communities. Task Force Neuro is an IRS 501(c)3 non-profit organization made up of volunteer staff. Funding for the organization comes from individual donations and grants.
IN THE NEWS
TASK FORCE NEURO
P.O. Box 1001
Havelock, NC 28532