WHY "HOPE HAPPENS"
No patient should hear, “There is no treatment. There is no cure.” But when it comes to neurological disorders — like ALS, Parkinson’s, Alzheimer’s and so many others — treatments and cures continue to evade us.
No longer, however, will we say, “There is no hope.” That was yesterday’s story. Today we embrace and spread hope. We’re building a community of caring people who will accelerate research that leads to treatments and cures in our lifetime.
In so doing, we will honor those we know who have suffered with a neurological disorder so that those who follow will suffer no more.
Who Do You Know? What is Your Hope?
You know someone who had, now has or will have a neurological disorder. Simply put, it’s more likely that you or someone you know will be diagnosed with a neurological disorder than with cancer. Disorders of the nervous system (the brain, spinal cord, nerves and muscles) are the most common causes of disability for people of all ages. Fifty million Americans have a permanent neurological disability that limits their daily activity and may be fatal.
If you know someone with a neurological disorder, this isn’t about those statistics, though. This is about one person.
That person is a friend or relative who received a dreaded diagnosis and who needs better treatments and cures. We hope for that person. And we draw inspiration from that person to hope for others.
The day will come when we have treatments and cures for all of these disorders. On that day, we will thank that person who inspired us.
How Critical is the Need for Funding and Research
Federal funding for research and development into treatments for neurological disorders significantly lags behind funding earmarked for diseases like AIDS and cancer.
While the federal government, through the National Institutes of Health, funds 36% of all U.S. medical research, only 0.5% of those funds are earmarked for research into neurodegenerative diseases via the National Institute of Neurological Diseases and Stroke (NINDS).
After several years of expansion, the NIH has recently experienced slow or no growth. As a result, it is anticipated that only about 15% of approved NIH grants will actually be funded, and this number may be lower still in coming years. Scientists rely more than ever on private-sector donations to fund their research.
Neurological Disorders and the Toll They Take
Neurological Disorders (ND): any disorder of the body nervous system. Structural, biochemical or electrical abnormalities in the brain, spinal cord or other nerves can result in a range of symptoms. Here are some facts about only a small fraction of neurological disorders:
In 2016, an estimated 5.4 million Americans of all ages had Alzheimer’s disease. This includes an estimated 5.2 million people age 65 and older and approximately 200,000 individuals under age 65 who have younger-onset Alzheimer’s. One in nine people age 65 and older (11 percent) has Alzheimer’s disease.
More than 5 million Americans are living with the disease. By mid-century, someone in the United States will die from Alzheimer’s every 53 seconds.
Alzheimer’s disease is 6th leading cause of death in the United States. Approximately 700,000 people die in 2016 because they have Alzheimer’s.
1 in 9 seniors will have Alzheimer’s or another dementia. Almost two-thirds of Americans with Alzheimer’s are women.
In 2016, 15.9 million caregivers provided an estimated 18.1 billion hours of unpaid care valued at more than $221.3 billion.
(Sources: Alzheimer’s Association)
Amyotrophic Lateral Sclerosis (ALS)
In the U.S. alone, approximately 6,400 people are diagnosed with ALS each year. The incidence of ALS is two per 100,000, and up to 20,000 Americans may have the disease at any given time.
The onset of ALS is insidious with early symptoms of muscle weakness or stiffness. Progression to wasting and paralysis of the muscles of the limbs and trunk as well as those controlling functions such as speech and swallowing and later affecting involuntary muscles such as the lungs impacting breathing typically follow.
Although life expectancy of an ALS patient averages two to five years from the time of diagnosis, this disease is variable and many people live with quality for five years and more. About 35% of all patients live more than three years after diagnosis.
(Source: The ALS Association)
Autism and autism spectrum disorder (ASD) are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors.
ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, math and art.
One in 68 U.S. children (1.47%) has an autism spectrum disorder (ASD), a 30% increase from 1 in 88 two years ago, according to a new report released Thursday by the Centers for Disease Control and Prevention.
Prevalence of autism in U.S. children increased by 119.4 percent from 2000 (1 in 150) to 2010 (1 in 68).
It is the fastest-growing developmental disability.
Source: Autism Society
Brain and Spinal Cord Injury
Spinal Cord Injuries affect 54 million people in America, and 17,000 cases arise each year. There are about 282,000 people in the United States living with spinal cord injuries. About 80 percent of those who experience spinal cord injuries are male.
Approximately 38 percent of spinal cord injuries are the result of motor vehicle accidents. Other leading causes include acts of violence, falls, and sports.
The average age at which spinal cord injuries occur is 42 years.
Traumatic Brain Injuries are sustained by 1.7 million each year in the United States. Of these, 52,000 die, 275,000 are hospitalized, and 1.365 million are treated and released from an emergency department. Thenumber of people with TBI who are not seen in an emergency department or who receive no care is unknown.
Leading causes of TBI are: falls (35.2%); motor vehicle-traffic crashes (17.3%); struck by/against events (16.5%); assaults (10%); and unknown/Other (21%). Blasts are a leading cause of TBI for active duty military personnel in war zones.
Males are about 1.5 times as likely as females to sustain a TBI. The two age groups at highest risk for TBI are 0 to 4 year olds and 15 to 19 year olds.
Source:National Spinal Cord Injury Statistic Center and Brain Line
Is the most common physical disability in childhood. Every hour, another child is born with Cerebral Palsy (CP). Spastic Hemiplegia, where one half of the body has difficulty with voluntary movement, is the most common presentation of Cerebral Palsy. There is no known cure.
Cerebral palsy (CP) is an umbrella term that refers to a group of disorders affecting a person’s ability to move. It is a permanent life-long condition, but generally does not worsen over time. It is due to damage to the developing brain either during pregnancy or shortly after birth.
It affects people in different ways and can affect body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance.
People who have cerebral palsy may also have visual, learning, hearing, speech, epilepsy and intellectual impairments.
Globally, over 17 million people have Cerebral Palsy. 1 in 500 babies is diagnosed with Cerebral palsy. 1 in 2 people with Cerebral Palsy live in chronic pain. 1 in 3 cannot walk. 1 in 5 cannot talk. 1 in 10 has a severe vision impairment. 1 in 25 has a severe hearing impairment.
Source: (Cerebral Palsy Foundation)
1 in 26 Americans will develop epilepsy in their lifetime. An estimated 3 million Americans and 65 million people worldwide currently live with epilepsy. Each year at least 200,000 people are diagnosed with epilepsy. In two-thirds of patients diagnosed with epilepsy, the cause is unknown.
Epilepsy affects more people than Multiple Sclerosis, Cerebral Palsy, Muscular Dystrophy and Parkinson’s combined – yet receives fewer federal dollars per patient than each of these.
It is estimated up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexpected Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents. SUDEP accounts for 34% of all sudden deaths in children.
2.2 million U.S. troops have served in the Iraq and Afghanistan conflicts; it is estimated that 440,000 of these soldiers (20%) will experience traumatic brain injury (TBI) and more than 100,000 are expected to develop post-traumatic epilepsy (PTE).
Epilepsy costs the United States approximately $15.5 billion each year. The indirect costs associated with uncontrolled seizures are seven times higher than that of the average for all chronic diseases.
Source: Cure Epilepsy
Huntington’s Disease (HD) is a devastating, hereditary, degenerative brain disorder that may affect cognitive ability or mobility and include depression, mood swings, forgetfulness, clumsiness, involuntary twitching and lack of coordination. As the disease progresses, concentration and short-term memory diminish and involuntary movements of the head, trunk and limbs increase. Walking, speaking and swallowing abilities deteriorate. Eventually the person is unable to care for him or herself. Death follows from complications such as choking, infection or heart failure.
HD symptoms typically begin in mid-life, between the ages of 30 and 50, though onset may occur as early as the age of 2. Children who develop the juvenile form of the disease rarely live to adulthood. Each child of a person with HD has a 50/50 chance of inheriting the fatal gene. Everyone who carries the gene will develop the disease.
More than a quarter of a million Americans have HD or are “at risk” of inheriting the disease from an affected parent.
Source: (Huntington’s Disease Society of America)
Moyamoya is a rare, progressive cerebrovascular disorder caused by blocked arteries at the base of the brain in an area called the basal ganglia. The name “moyamoya” means “puff of smoke” in Japanese and describes the look of the tangle of tiny vessels formed to compensate for the blockage.
The disease primarily affects children, but it can also occur in adults. In children, the first symptom of Moyamoya disease is often stroke, or recurrent transient ischemic attacks (TIA, commonly referred to as “mini-strokes”), frequently accompanied by muscular weakness or paralysis affecting one side of the body, or seizures. Adults most often experience a hemorrhagic stroke due to recurring blood clots in the affected brain vessels.
Individuals with this disorder may have disturbed consciousness, speech deficits (usually aphasia), sensory and cognitive impairments, involuntary movements, and vision problems. Because it tends to run in families, researchers think that Moyamoya disease is the result of inherited genetic abnormalities. Studies that look for the abnormal gene(s) may help reveal the biomechanisms that cause the disorder.
The approximate incidence of moyamoya disease in the U.S. is 0.086 new patients per 100,000 people per year.
(An example of a very rare orphan disease Medscape)
Also known as MS, multiple sclerosis can affect your brain, spinal cord, and the optic nerves in your eyes. It can cause problems with vision, balance, muscle control, and other basic body functions. The effects are often different for everyone who has the disease. Some people have mild symptoms and don’t need treatment. Others will have trouble getting around and doing daily tasks.
MS happens when your immune system attacks a fatty material called myelin, which wraps around your nerve fibers to protect them. Without this outer shell, your nerves become damaged. Scar tissue may form.
The resulting damage means your brain can’t send signals through your body correctly so nerves don’t work as they should to help you move and feel. Symptoms include: having trouble walking, feeling tired, muscle weakness or spasms, blurred or double vision, numbness and tingling, sexual problems, poor bladder or bowel control, pain, depression and problems focusing or remembering.
People are typically diagnosed between ages 20 and 50.
More than 2.3 million people are affected by MS worldwide. Because the Centers for Disease Control and Prevention (CDC) does not require U.S. physicians to report new cases, and because symptoms can be completely invisible, the prevalence of MS in the U.S. can only be estimated.
Source: MS Society
The muscular dystrophies are a group of over 30 genetic diseases characterized by progressive weakness and degeneration of the skeletal muscles controlling movement. Some forms are seen in infancy or childhood, while others are not seen until middle age or later.
Duchenne MD (DMD), the most common form, primarily affects boys. It is caused by the absence of dystrophin, a protein involved in maintaining integrity of muscle. Onset is typically between 3 and 5 years and then progresses rapidly. Most boys are unable to walk by age 12, and require a respirator to breathe. Girls in these families have a 50 percent chance of inheriting the defective gene and passing it to their children.
Myotonic MD (MMD) is the most common adult form. It is typified by prolonged muscle spasms, cataracts, cardiac abnormalities, and endocrine disturbances. Typical physical symptoms are long, thin faces, drooping eyelids, and a swan-like neck.
There is no specific treatment to stop or reverse any form of MD.
Source: Muscular Dystrophy Association
Parkinson’s disease (PD) is a chronic and progressive movement disorder, meaning that symptoms continue and worsen over time.
Nearly one million people in the US are living with Parkinson’s disease and approximately 60,000 individuals are diagnosed annually. The cause behind Parkinson’s is unknown, and there is presently no cure. There are treatment options such as medication and surgery to manage symptoms.
Parkinson’s involves the malfunction and death of vital nerve cells in the brain, called neurons.
The groups of symptoms include: tremor of the hands, arms, legs, jaw and face; bradykinesia or slowness of movement; rigidity or stiffness of the limbs and trunk; and postural instability or impaired balance and coordination.
Source: Parkinson’s Disease Foundation
A stroke is a “brain attack”. It can happen to anyone at any time and occurs when blood flow to an area of the brain is cut off. When this happens, brain cells are deprived of oxygen and begin to die. When brain cells die during a stroke, abilities controlled by that area of the brain such as memory and muscle control are lost. How a person is affected by their stroke depends on where the stroke occurs in the brain and how much brain damage there is.
Stroke kills almost 130,000 Americans each year — 1 out of every 20 deaths. On average, one American dies from stroke every 4 minutes. Every year, more than 795,000 people in the United States have a stroke. About 610,000 of these are first or new strokes.
About 87% of all strokes are ischemic strokes—when blood flow to the brain is blocked. Stroke costs the United States alone an estimated $34 billion each year.
Sources: Stroke Association
…And Many Other Neurological Disorders. More than 600 scientists work in Hope Center laboratories on wide-range of neurological disorders. The number of disorders is too vast to include here so we have chosen to list and summarize just a few above.