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Cerebral Palsy Group Support and Resources for Cerebral Palsy

Posted: March 26, 2017 at 11:44 am

The mission of Cerebral Palsy Group is simple: to educate and support those who live with a CP diagnosis. To do so, we have created a resource where anyone can learn more about the symptoms and causes of muscular disorders and find resources and support for assessment and comparison of treatment options and technologies. We strive tto cover everything from traditional approaches to cutting-edge research.

Any type of disability diagnosis raises difficult questions about long-term plans for those affected. Uncertainty and fear of the unknown can cause a ripple effect of stress throughout a family. Our goal is to break through the confusion and make it easier for parents to seek appropriate care.

For those who play an active role in a childs development, nothing is more critical than defining and identifying the symptoms of CP as quickly as possible. The sooner that families are educated on cerebral palsy, the sooner both health professionals and loved ones can start working toward a better life for the affected child.

The Cerebral Palsy Group helps you understand what to look for and explains the underlying causes behind possible symptoms and behaviors. When you need answers, weve created ways for you to get information (and hope) at any hour of the day.

Though it may look a little bit different, the future is bright for those with Cerebral Palsy. Our focus is on bringing to light the mechanisms of the disability in hopes that education can help affected families plan for this future.

Children may develop muscle disorders for any number of reasons, including birth injury or trauma. Experts are still struggling to understand the full scope of these disorders. Our goal is to continue to bring you the most up-to-date information from trusted sources as it becomes available.

This resource goes beyond the physical aspects of the condition. Emotional well-being is also key to treatment. Those living with cerebral palsy may face social stigmas, bullying or other related pressures. Coping skills and behavioral techniques can be taught as lifelong tools to handle these concerns. We give you the means to learn more about the different options available, so you can make smart decisions from the start.

Nothing compares to having a safety net, which is what our group is always striving to be for you. We offer a space for families to read about any and all concerns. We strive to provide the network that will point the way toward a more positive life for the child with CP and his or her family. For instance, physical therapy is a proven way for those with CP to gain more muscle strength and control, so children can feel more empowered in daily life. Behavioral therapy is also an excellent option for children with emotional roadblocks when confronting limitations. There is always something that can be done to aid a child living with cerebral palsy, and our work here is geared toward helping you find it.

Whether you want to know about the different muscle groups in the body or you want to engage in more therapeutic daily routines, we work to offer the expertise you need with the compassion you deserve.

It can often be difficult to know when and if you are making the right decisions for your child or loved one. It is our mission to help you be confident every step of the way.

By advocating for those with cerebral palsy, we seek to give them their best chance to be productive members of the community. It is important to us that public perception of those with disabilities shifts. It is key to show that individuality is still first and foremost, and this disability is not all-consuming.

Support is important. It is our hope that finding a resource on the future you may be facing can help ease your anxieties and help you to feel just a little bit less overwhelmed.

Nothing in the medical world stays the same for long. We are here to update our resources and respond to the immediate concerns of those who seek our help. We stay informed on cutting edge research developments and treatment options, so you can continue to assess what to do next in the life of the child or the individual with the condition.

While Cerebral Palsy can add challenges to your and your child or loved ones life, it does not have to be isolating, or overwhelming. We seek to give you small, manageable goals that are practical for the whole family. We take sincere pride in bringing people together to create the best path to physical, mental and emotional wellness.

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What is cerebral palsy? | Cerebral Palsy Alliance

Posted: at 11:44 am

Cerebral palsy is an umbrella term that refers to a group of disorders affecting a persons ability to move. It is due to damage to the developing brain either during pregnancy or shortly after birth.

Cerebral palsy affects people in different ways and can affect body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. Although cerebral palsy is a permanent life-long condition, some of these signs of cerebral palsy can improve or worsen over time.

People who have cerebral palsy may also have visual, learning, hearing, speech, epilepsy and intellectual impairments.

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Cerebral Palsy Overview – Cerebal Palsy Guidance

Posted: at 11:44 am

Learning that your child has cerebral palsy can be devastating news. Yet, by educating yourself, including learning about treatment options and how to help manage the disorder, your child can still live a productive life.

Cerebral palsy (CP) is a neurological disorder that affects a childs movement, motor skills, and muscle tone. In most cases, cerebral palsy is caused by brain damage that develops while the baby is still in utero or during or shortly after birth.

Cerebral palsy is a congenital disorder, affecting around 500,000 in the U.S. There is currently no cure for cerebral, but there are numerous treatment options that can help babies and children live quality lives that turn into successful adult lives.

Unfortunately, cerebral palsy can lead a number of other medical conditions, depending on the severity of the disorder. Other medical issues associated with cerebral palsy include:

The severity andtype of cerebral palsya child has can vary.Some children may just have some muscle spasms, while others are unable to walk. Some may have seizures and some may have cognitive disabilities. The condition can affect any muscles in the body, so possible complications include trouble with balance, eye problems, bladder or bowel problems, poor range of motion in joints, and difficulty swallowing. Cerebral palsy does not get worse with time.

There are different types of cerebral palsy that affects babies and children in different ways:

Spastic cerebral palsy is the most common type of the disorder, affecting around 76.9% of all people with CP. Spastic cerebral palsy differs from other types of CP due to it distinct symptoms and characteristics. Common symptoms and characteristics of spastic CP include:

Spastic quadriplegia is the most severe form of spastic CP. This type of cerebral palsy can affect a childs entire body, placing them at risk of limb deformities. Many children withspastic quadriplegia will also experience chronic seizures, so its important to work with a healthcare team to figure out the best treatment options.

Another form of spastic CP isspastic diplegia. Its not as severe asspastic quadriplegia, as children are still able to walk. However, they often walk on their toes and have issues with balance and coordination. Other symptoms of spastic diplegia include delayed milestones, fatigue, seizures, flexed knees, and a crouched gait. Legs are often affected more than arms.

Dyskinetic Cerebral Palsy

Dyskinetic cerebral palsy (also known as dystonic and athetoid) is the 2nd most common form of cerebral palsy, although it only affects around 2.6% of all cases of the disorder. Symptoms of dyskinetic cerebral palsy include:

Ataxic cerebral palsy is named after the word ataxia, meaning without order. Its the least common type of cerebral palsy, marked by poor balance, incoordination, tremors, and shaky movements.

Mixed cerebral occurs when the child has two or more types of the aforementioned types of cerebral palsy. Spastic-dyskinetic cerebral is the most common type of mixed cerebral palsy. When children have mixed cerebral palsy, they may exhibit a combination of symptoms, matching each type of the disorder they have.

If you see obvious symptoms of cerebral palsy, you should consult your childs pediatrician right away. Even if you notice things that might not be the more obvious signs of cerebral palsy (such as muscle spasms, stiff muscles, and abnormal movements), you should always take your concerns to your childs doctor. Early intervention is key when helping children with cerebral palsy.

Also keep in mind that there is no need to panic. In some cases, it will turn out that the child doesnt have CP. In other instances, parental instincts are spot-on, and treatment can begin shortly after.

In some instances, the cause of cerebral palsy remains unknown. However, research indicates that the disorder can be caused during pregnancy when the babys brain fails to develop correctly or gets damaged. Brain damage can occur from maternal illnesses and diseases, genetic factors, or using illegal drugs while pregnant Cerebral palsy can also happen during childbirth. Infants born too early are at risk of developing the disorder.Premature infants run the risk of oxygen loss and a host of other medical issues that can lead to brain damage, which may eventually lead to cerebral palsy.

Cerebral palsy doesnt always occur during pregnancy or childbirth. In some instance, children may have an accident during childhood that can lead to brain damage and cerebral palsy. Additionally, babies or toddlers may develop a severe medical condition, such as meningitis, that can lead to brain damage and cerebral palsy.

Another possible cause of cerebral palsy is brain damage caused by medical negligence. When the baby is deprived of oxygen during birth, the damage can be enough to cause cerebral palsy. Improper use of forceps and other tools during delivery can also cause damage.

A doctor may also be at fault for failing to do something, like delaying a Cesarean section or failing to perform one altogether, not properly monitoring the health of the fetus, or not detecting and treating infections. Many parents have started lawsuits against doctors and hospitals when negligence was suspected in a cerebral palsy case.

No, cerebral palsy isnt a disease. As aforementioned, its aneurological disorder which affects movement and muscle control. Cerebral refers to the brain and palsy refers to movement.

Theres a huge misconception that all children with cerebral palsy are intellectually impaired. Not only is this myth untrue, but many children with cerebral palsy have above average intelligence. There are doctors, attorneys, teachers, and more, who live with cerebral palsy yet carry out demanding careers. Remember, the part of the brain thats damaged is the part that controls movement only.

Some children, however, will develop some form of cognitive impairment, due to the injury that caused CP in the first place. TheNational Institute of Neurological Disorders and Stroke (NINDS) reports that around 2/3 of all people with cerebral palsy have some form of intellectual impairment. The degree of the impairment depends on individual circumstances. Healthcare professionals will be able to work with your child to determine what level, if any, of cognitive impairment exists.

In many instances, cerebral palsy isnt diagnosed until the child reaches the age of walking and talking. If parents suspect a problem with lack of muscle control and coordination, theyll usually find out from the childs physician if he/she has cerebral palsy.

In other instances, especially if a baby is born prematurely or has a heightened risk of developing the disorder, there is a chance that the infant will get a diagnose in the first few months of life.

When diagnosing cerebral palsy, doctors look for poor coordination skills, spastic movements, uncontrolled muscle movements. Based upon a muscle movement test and the childs medical history and a physical exam, a doctor will be able to ascertain whether your child has cerebral palsy or not.

Physicians will also perform development screenings on the infant or child. A development screening test will allow doctors to see if the patient has motor movement delays or any other type of developmental delays.

Its important to remember that diagnosing cerebral palsy is not done in one day. It will take time to get a proper diagnosis, although premature infants may get a quicker diagnosis than a toddler.

Most cases of cerebral palsy cannot be prevented because most causes of the disorder are still unknown. However, there are always steps you can take while pregnant to helplower your risk of having a baby with cerebral palsy.

If youre not pregnant yet, make sure youre eating healthy, wholesome foods and that any pre-existing medical problems are under control. If youre already pregnant, its crucial to continue to eat healthy while taking prenatal vitamins and avoiding drinking alcohol and smoking.

Unfortunately, no one knows when an infant will suffer brain damage at the hands of a physician. As mentioned earlier, pulling too hard on an infant, especially while using birth-assisting tools (forceps) can result in severe injuries, including brain damage.

On the other hand, infants who are not pulled out in time during childbirth run the risk of being deprived of oxygen, so doctors must extremely careful not only when pulling the infant out, but ensuring the infant doesnt get hurt when a quick delivery is needed.

Sometimes an emergency C-section is needed if an infant is not progressing as he/she should during a normal delivery. If the C-section isnt ordered and carried out in time, the infant may suffer brain damage, which can lead to cerebral palsy.

If you already have an infant or toddler at home, be certain to baby proof your home. This includes making sure cleaning supplies and other toxic substances are out of reach.

Currently theres no cure for cerebral palsy, but a variety treatment options can provide help and improve the quality of life of babies and children.

Therapy is common for almost all children with cerebral palsy as it helps them with the crucial aspects of growth and development. Therapy is usually started shortly after a diagnosis and can include both physical and speech therapy. Therapies help patients learn techniques for movements, stretching, hearing, eating, drinking, learning, speech, hearing, and social development.

Medications

Generally, medications are used to help control spastic movements, seizures, and control pain. Your physician will go over what kind of medication your child will need, depending on his/her symptoms. The followingmedications may be prescribed to help with cerebral palsy symptoms include:

Surgery

Surgery, in some cases, may be a treatment option. Surgery for cerebral palsy is usually to help children have better orthopedic functions. Common surgery for cerebral palsy patients include repairing hip dislocations, as well as scoliosis surgery. Surgery also may include nerve root repair, tight/stiff muscle repair, and surgery to reduce spasticity.

Leg braces, wheelchairs, communication boards, and other assistive devices may also be a part of the treatment care plan. In addition, your child may have numerous healthcare professionals assisting him/her, including physical therapists, physicians, counselors, social workers, nurses, special education teachers, and more.

Surgery in the upper extremities is also common, especially on the arms and shoulders.

Therapy

Therapy, provided in various forms, help people with cerebral palsy withphysical, mental, social, and academic benefits. If its started early enough after diagnosis, many forms of therapy for cerebral palsy can reduce impairment and the risks of developing other conditions associated with cerebral palsy.

Therapy is usually combined with other treatments, such as drug therapy, surgery, and assistive technology, which help benefit the child even further. When physicians determines the childs medical goals, they can then develop an individualized therapy plan.

Keep in mindthat therapy can also be extremely beneficial to parents and caregivers. For example, nutritional therapy can help people understand specific dietary needs, while behavioral therapy can help teach parents the benefits of positive reinforcement.

Common types of therapy used to help children with cerebral palsy include:

Prior to the mid 20th century, many children with cerebral palsy didnt live through adulthood, but that was before todays medical advancements. Cerebral palsy is not a fatal disorder, but it generally requires early intervention and good medical care, especially for children with severe forms of the disorder. Today, the odds of reaching adulthood are much more favorable for children with cerebral palsy.

Its important to note that some of the conditions of cerebral palsy can be life-threatening if not treated in time or correctly, such asbreathing and swallowing difficulties (which can lead to pneumonia or malnutrition), chronic seizures, or life-threatening pressure sore infections.

Associated conditions, also known as associated disorders, are medical conditions that co-exist with another medical condition. However, associated conditions shouldnt be confused with secondary conditions, which are caused directly by the primary condition (cerebral palsy).

For instance, a secondary condition of cerebral palsy could be the inability chew and swallow directly, skin problems due to drooling, or bowel issues. In other words, secondary conditions happen because of cerebral palsy itself, while associated conditions are different medical issues altogether that some children with cerebral palsy will develop.

There are a number of cerebral palsy associated conditions. It doesnt mean that every child with cerebral palsy will develop these, but generally, kids with CP have at least one co-existing medical disorder. The most common associated conditions of cerebral palsy include:

The prognosis for cerebral palsy depends on each individual, but most people with the disorder have a typical life expectancy, no different from anyone else. Manychildren with cerebral palsy have average or even above average intelligence measures, although many may have some form of cognitive issues that will require additional educational assistance. Yet, most kidscan go to school with their peers, but may need adaptive equipment for physical needs, to communicate, or for mobility.

Some children have light cerebral palsy, as mentioned earlier, and aside from muscle spasms and muscle tightness, they may be able to carry on as non-disabled child, with no associated disorders. Other cases of cerebral palsy, are of course, more severe, and a child with severe CP may have a number of associated conditions. The associated conditions are typically what cause many medical problems, which, in some cases, can affect lifespan, especially without early intervention.

Children with special needs often need additional medical care and other requirements that can become quite costly. According to theMorbidity and Mortality Weekly Report (MMWR), the average cost to raise a child with cerebral palsy, including direct and indirect medical costs, is around $921,000 (this doesnt include out-of-pocket expenses, lost wages, or emergency room visits).If you find yourself struggling to keep up with expenses, there are several options that you and/or your child may qualify for.

For example, kids with motor dysfunctions qualify for cash assistance from the government. This falls under section 111.000 of the Social Security Disability Evaluation. There is a process you need to follow to get your child qualified, including gathering pertinent medical information, labs and tests results, social security number, birth certificate, etc. Those approved for cash assistance from the Social Security Administration (SSA), generally qualify for full medical insurance at little to no charge.

Additionally, you may qualify for free or reduced child care for special needs children under theAmericans With Disabilities Act (ADA) and educational assistance under theThe Individuals with Disabilities Act of 2004.

Last but not least, if your childs cerebral palsy was caused due to negligent medical mistakes, you have the option to file for compensation against the responsible party. Negligent medical mistakes can happen in a variety of different ways.

As previously mentioned, medical errors occur when a doctor or another healthcare professional make careless and negligent mistakes during the mothers pregnancy, or during or shortly after childbirth. The following are some of the common ways that medical errors occur:

Malpractice is a tricky area, however, because not only does there have to be enough proof in place to file a case, but there are also certain rules in place that must be met. For example, most states require that a patient/doctor relationship must have existed when the medical negligence took place. Additionally, youll need to ensure that injuries did indeed come from the negligent mistakes of a healthcare provider (s). However, if the case is valid, a successful legal suit can help you take care of your child for life.

The United Cerebral Palsy (UCP) is a non-profit organization dedicated to helping people with cerebral palsy. Assistance from UCP comes in many different ways from over 80 nationwide affiliates, and can include helpwith transportation, housing, recreational activities, traveling, health awareness, assistive technologies, and much more. According to the official UCP site,

UCP educates, advocates and provides support services to ensure a life without limits for people with a spectrum of disabilities. UCP works to advance the independence, productivity and full citizenship of people with disabilities through an affiliate network that has helped millions.

Currently, there is no cure for cerebral palsy. However, the disorder itself doesnt get worse as someone ages (although associated medical conditions of CP can sometimes increase in severity). That being said, scientists and researchers conduct ongoing studies in hopes of one day finding a cure.

Some of the current cerebral palsy research includes studies on stem cells, which has shown promise. In a study done by Dr. Evan Snyder, a neurologist at Harvard Medical School, mice injected with stem cells had damaged brain cells replaced with healthy ones. Its still unclear whether this method will work with children, but scientist continue to research to determine if there is a safe and proven way for damaged brain cells to repair themselves or replenish with new cells.

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Cerebral Palsy | The Mighty

Posted: at 11:44 am

Cerebral palsy is a neurological disorder that affects the part of the brain that controls muscle movements. Because of this, cerebral palsy can permanently affect balance, muscle coordination and other body movements. Cerebral palsy typically appears in infancy or childhood and is usually diagnosed before the age of three. It is the most common childhood disability, affecting one in every 500 babies. Although there is no cure, it is not a degenerative disease so children can begin learning to manage it immediately after diagnosis.

There are a number of treatment options available to help manage the symptoms of cerebral palsy and can be tailored to suit each individuals needs, depending on the specific effects and severity of their condition. Treatment options include physical or occupational therapy, speech therapy, medication, corrective surgery, braces or other orthotic devices, wheelchairs or walking aids and communication aids. The earlier treatment begins, the more opportunities a child has to make adjustments and grow accustomed to new ways of accomplishing tasks.

Cerebral palsy can cause difficulty performing voluntary movements. Some symptoms include stiff muscles, a different gait or way of walking and muscle tone that is too stiff or too floppy. Other neurological symptoms can arise as well, such as seizures, pain, hearing loss or impaired vision. Though cerebral palsy impairs motor skills, many people learn to walk and communicate effectively and/or function entirely independently.

Research continues to be conducted in hopes of discovering even more effective treatments and prevention methods. There are several foundations and organizations that provide resources, support and information about cerebral palsy.

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What is CP? – Cerebral Palsy Foundation

Posted: at 11:44 am

Phone: 212 520 1686

Email: [email protected]

Types of CP

Gross Motor Severity

Manual Ability Issues

Communication Issues

Cause and Timing

Risk Factors

Signs and Symptoms

Diagnosis

Accompanying Issues

Treatments

Assistive Devices

Adults With CP

Key Facts

3 COLUMBUS CIRCLE | 15TH FLOOR | NEW YORK, NY 10019 | PHONE 212 520 1686

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Walk in our shoes brings awareness to cerebral palsy – knopnews2

Posted: at 11:44 am

North Platte, NEB. March is cerebral palsy month.

Families banded together at the Lincoln County Fairgrounds to raise awareness for cerebral palsy.

The North Platte Jaycees and the Harvey family hosted the event on Saturday.

Interactive booths were on hand to help simulate the struggles someone living with CP may experience.

Executive director for United for Cerebral Palsy of Nebraska, BevVan Phillips says, one in 323 people are affected by the motor disorder.

“Because it’s a brain injury, there’s a wide variety of things that people can experience, from mobility to intellectual disabilities to difficulty with their hands and simple everyday activities like being able to write, brush their teeth or use a computer,” she said.

The funds from the event will help support local families who are living with the disorder.

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Missing 13-year-old with cerebral palsy found safe – WLWT.com – WLWT Cincinnati

Posted: at 11:44 am

NORWOOD, Ohio

A 13-year-old with cerebral palsy has been found safe after being reported missing in Norwood, police said.

Andrew Spencer was last seen around 3:30 p.m. Tuesday at Norwood Middle School, where he was participating in an after-school program, his mother, Sarah Spencer, said. Andrew has cerebral palsy and wears leg braces.

His parents said they grew increasingly worried when he did not return home Tuesday night.

Family members said the young teen did not show up to school Wednesday morning.

He was found safe around 11 a.m. Wednesday, police said.

“He cried and just gave us big hugs,” Sarah Spencer said. “Just relieved and happy that hes found and safe. Just relieved.Officials said, railroad worker, Andy Combs, found the boy in the woods by the tracks in the 3000 block of Harris Road in Norwood.

Police and rail workers had been scouring the area for hours after friends told police he liked the woods.

“It always amazes me the support of the people in Norwood,” Norwood police Lt. Ron Murphy said. “There were people looking all night for him. There were people looking this morning when our officers were out.”

Andrew was taken to Childrens Hospital for evaluation.”Theyre trying to warm up his body temperature,” Sarah Spencer said. “When he came in, his body temperature was pretty low, so theyre just warming him with warm blankets, and his feet are a little water logged. But they say his muscles dont show any signs of hypothermia.”

Sarah Spencer said once the boy is warmed up, he would be allowed to go home.

WEBVTT HE THOUGHT HIM — THEY FOUND HIMA MILE AWAY FROM NORWOOD MIDDLESCHOOL SAFE AND SOUND.13-YEAR-OLD ANDREW SPENCER ISWRAPPED IN WARMTH AT CHILDREN’SHOSPITAL AFTER A LONG NIGHT INTHE BITTER COLD.THE EIGHTH-GRADER WITH CEREBRALPALSY AND LEG BRACES HAD BEENMISSING SINCE 3:30 PM YESTERDAY.HIS MOM SAYS HE BOLTED OUT OF ANAFTER SCHOOL PROGRAM AT NORWOODMIDDLE SCHOOL.THE COMMUNITY RAN ON LITTLESLEEP LOOKING FOR HIM ALL NIGHT THEN THIS MORNING.>> WE JUST FOUND HIM.>> YOU FOUND HIM?>> YEAH HE’S TALKING TOO SO HE’SOK.TAMMY: RAILROAD WORKER, ANDYCOMBS HEARD THE BOY SCREAMINGFOR HELP IN THE WOODS BY THETRACKS ON HARRIS AVENUE.POLICE AND RAIL WORKERS HAD BEENSCOURING THE AREA FOR HOURSAFTER FRIENDS TOLD POLICE HELIKED WOODS.>> IT ALWAYS AMAZES ME THESUPPORT OF THE PEOPLE INNORWOOD.THERE WERE PEOPLE LOOKING ALLNIGHT FOR HIM LAST NIGHT.THERE WERE PEOPLE LOOKING THISMORNING WHEN OUR OFFICERS WEREOUT SAYING THEY WERE RUNNINGINTO PEOPLE IN WOODS.TAMMY: ANDREW WAS COLD, HUNGRYAND COULDN’T WALK.PARAMEDICS RUSHED HIM TOCHILDREN’S HOSPITAL.>> THEY’RE TRYING TO WARM UP HISBODY TEMPERATURE WHEN HE CAMEIN, HIS BODY TEMPERATURE WASPRETTY LOW, SO THEY’RE JUSTWARMING HIM WITH WARM BLANKETSAND HIS FEET ARE A LITTLE WATERLOGGED.BUT THEY SAY HIS MUSCLES DON’TSHOW ANY SIGNS OF HYPOTHERMIA.TAMMY: POLICE SAY IT AND IT HASA HISTORY OF TAKING OFF.>> HIS SISTER ASKED HIM IF HEWOULD DO IT AGAIN AND HE SAIDNO.TAMMY: POLICE SAY HOPEFULLYANDREW WILL LEARN A LESSON THATPEOPLE CARE ABOUT HIM ENOUGH TOGO TO GREAT LENGTHS TO FIND HIM.>> THERE’S SOMEONE WATCHING HIMFOR SURE WE’RE LUCKY WE LIVE INTHE COMMUNITY WE LIVE IN BECAUSETHEY REALLY STEPPED UP.TAMMY: ANDREW’S MOM TELLS MEONCE HE IS WARMED UP

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Zubizarreta House is big step for spinal cord treatments – Crain’s Cleveland Business

Posted: at 11:43 am


Crain’s Cleveland Business
Zubizarreta House is big step for spinal cord treatments
Crain’s Cleveland Business
From his office on MetroHealth's Old Brooklyn campus, Kilgore, a biomedical engineer and researcher at MetroHealth, has watched construction progress on the Zubizarreta House, a home for patients with spinal cord injuries to stay while receiving

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Researchers announce promising results for Parkinson’s patients – KETV Omaha

Posted: at 11:42 am

OMAHA, Neb.

People taking part in clinical trials for a new drug to treat Parkinson’s disease are showing signs of motor skill improvement, researchers at the University of Nebraska Medical Center said.

“You never know when you’re going to come down with something. You have to stand up and say, ‘I have to beat this,'” Tim Hoffman, 66, said.

Hoffman has lived in the grip of Parkinson’s for more than a decade. But a new breakthrough drug, announced Thursday by UNMC researchers could change that.

“The goal of the medication and what we saw in this study is to help patients with Parkinson’s disease to function better,” Dr. Pamela Santamaria of Neurology Consultants of Nebraska said.

The drug is called Sargramostim. It treats the causes of the disease instead of only the symptoms.

“Our research has shown how we can give a patient a medication that can help change their immune system, and therefore affect the total progression and the outcome of the Parkinson’s disease,” Santamaria said.

Hoffman was one of the patients who took part in the clinical study.He received daily treatment injections for two months and said he’s started to see a positive change.

“I felt better and I had more flexibility in my activities,” Hoffman said.

Doctors said the next step in research will be to study how to make the drug into a pill so that it will be widely accessible.

“Our ultimate goal is to have this drug or a drug similar to it become FDA approved so then it would be available for all patients with Parkinson’s disease (globally),” Santamaria said.

The results of the study also showed improvement in patients with neurodegenerative disorders including Azheimer’s disease and strokes. There is no timetable on when the drug could become widely available for use.

WEBVTT UNMC WITH MOREON WHAT TODAY’S ANNOUNCEMENTMEANS.SEAN: ALEXANDRA, DAVID 20 YEARSOF RESEARCH AND CLINICAL STUDYLEAD UP TO THE ANNOUNCEMENTTODAY.THIS NEW DRUG WON’T JUST MASKTHE PROBLEMS PEOPLE WITHPARKINSON’S FACE, BUT HELP TOCORRECT THE UNDERLYING CAUSES.>> YOU NEVER KNOW WHEN YOU’REGOING TO COME DOWN WITHSOMETHING.YOU HAVE TO STAND UP AND SAY IHAVE TO BE THIS.SEAN: TIM HOFFMAN’S LIVED IN THEGRIPS OF PARKINSONS FOR MORETHAN A DECADE.BUT A NEW BREAKTHROUGH DRUG,ANNOUNCED TODAY BY UNMCRESEARCHERS, COULD CHANGE THAT.>> THE GOAL OF THE MEDICATIONAND WHAT WE SAW IN THIS STUDY ISTO HELP PATIENTS WITHPARKINSON’S DISEASE TO FUNCTIONBETTER.SEAN: THE DRUG IS CALLEDSARGRAMOSTIM. TREATING THE CAUSES OF THEDISEASE INSTEAD OF JUST TREATINGTHE SYMPTOMS. >> OUR RESEARCH HAS SHOWN HOW WECAN GIVE A PATIENT A MEDICATIONTHAT CAN HELP CHANGE THEIRIMMUNE SYSTEM, AND THEREFOREAFFECT THE TOTAL PROGRESSION ANDTHE OUTCOME OF THE PARKINSON’SDISEASE.SEAN: HOFFMAN IS ONE OF THEPATIENTS, TAKING PART IN THECLINICAL STUDY.HE SAYS HE’S STARTING TO SEE APOSITIVE CHANGE.>> I FELT BETTER AND I HAD MOREFLEXIBILITY IN MY ACTIVITIES.SEAN: DOCTORS SAY THE NEXT STEPIN RESEARCH WILL BE TO STUDY HOWTO MAKE THE DRUG INTO A PILL SO THAT IT WILL BE WIDELYACCESSIBLE.>> OUR ULTIMATE GOAL IS TO HAVETHIS DRUG OR A DRUG SIMILAR TOIT BECOME FDA APPROVED SO THENIT WOULD BE AVAILABLE FOR ALLPATIENTS WITH PARKINSON’SDISEASE GLOBAL WIDE.SEAN: THE RESULTS OF THIS STUDYALSO SHOWS IMPROVEMENT FORNEURODEGENERATIVE DISORDERS LIALZHEIMER’S AND STROKES.THERE IS NO TIMETABLE ON WHENTHE DRUG COULD BECOME READILYAVAILABLE FOR USE.

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Peace Bridge to go green tonight to mark Cerebral Palsy Awareness Day – Buffalo News

Posted: at 11:42 am

The Peace Bridge, at the request of the Make Lemon Aide Foundation, will be bathed in green lighting Saturday to mark National Cerebral Palsy Awareness Day.

Lauren Walier, 18, began the nonprofit foundation after she learned six years ago that there was little federal funding for a condition that she and 17 millions others have across the country. Walier and her family live outside Atlanta, but her parents, Sherry and Peter Walier, are Hamburg natives, and many of the foundations activities take place in Western New York.

The Walier family looks to improve CP treatment in Buffalo using some of the proceeds raised in Run/Walk/Roll events in the region. This years fourth annual event will take place June 11 at Wilkeson Pointe at the Outer Harbor. For more information, visit makelemonaide.org.

Also Saturday, the Niagara Falls Illumination Board will turn off the lights on the Horseshoe and American falls from 8:30 to 9:30 p.m. to mark the World Wildlife Funds global Earth Hour initiative and help raise awareness and support for action on the issue of climate change.

[RELATED STORY: The Make Lemon Aide Foundation hosts an annual fundraiser in the Southtowns]

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Peace Bridge to go green tonight to mark Cerebral Palsy Awareness Day – Buffalo News

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