Finn Kelly is all smiles after the race

Recently, one family and its supporters made a great impact on the future of cerebral palsy research on behalf of its youngest family member, 8-year-old Finn Kelly. The Sleepy Hollow Half-Marathon on March 23 was the location for the first annual “Find a Cure for Finn” Fundraiser, spearheaded by Finn’s oldest siblings, 17-year-old Dillon and 15-year-old Tatum Kelly. Parents, Tim and Ellie Kelly of Rye, New York, son Dillon, and 9 other family members and friends set off on a 13.1 mile race, ultimately raising $37,255 for the Cerebral Palsy International Research Foundation (CPIRF). With two miles left in the marathon, Finn’s sisters Tatum, 15 and Shane 10, jumped in to run alongside their parents and older brother Dillon. At that point, Tim and Ellie also grabbed Finn in his stroller, running with him to the finish line. There were 75 Team Finn supporters in all, cheering loudly along the sidelines.

The inspiration behind the fundraiser, Finn Kelly, suffered a brain injury when he was born 11 weeks premature, and was diagnosed with cerebral palsy in infancy. Because he is non-verbal and non-ambulatory, the Kelly’s wanted to give Finn a “voice and wheels” through their participation in the half-marathon.

The Kelly family being interviewed by the local TV station, following their 13.1 mile race, in which they raised over $37,000 for the Cerebral Palsy International Research Foundation. Surrounding Finn (in jogging stroller) are from left: Tatum, Tim, Shane (in front of her dad), Ellie and Dillon

“This wonderful, caring family has presented CPIRF with the funds to enable cutting-edge research for treating, preventing and finding a cure for cerebral palsy (CP),” said Glenn R. Tringali, CEO and President of CPIRF. “We are incredibly grateful for the Kelly’s generosity. The CP research community increasingly counts on CPIRF’s financial support. Our ability to provide funding for additional, innovative research has become more urgent than ever before,” he added.

According to Finn’s mom Ellie, “We chose CPIRF as the recipient of our first annual fundraiser with the hope that our research investment can someday lead to a cure. I’m gratified that our family is able to help support and advance CPIRF’s important research initiatives and help others. We’re already planning next year’s fundraiser for the Foundation,” she added.

Elena Delle Donne while playing for the University of Delaware

Elena Delle Donne, former All American star basketball player from the University of Delaware and current member of the WNBA professional women’s basketball team, Chicago Sky, is spreading the word with CPIRF about an NIH-funded study for children ages 2 to 12 with spastic cerebral palsy by Dr. Christopher M. Modlesky of the University of Delaware. Delle Donne has an adult sister Lizzie who lives with cerebral palsy (CP).

“A former recipient of CPIRF funding, we are happy to help Dr. Modlesky get the word out about this important study,” said CPIRF CEO and President Glenn R. Tringali. “We are also excited to have Elena Delle Donne lending her name and assistance to help us recruit families who will benefit. A very impressive young woman, Elena Delle Donne is the number two pick overall in the recent WNBA draft. Despite her hectic schedule, her loyalty o Delaware, where this research study will be conducted, and her commitment to her sister are truly admirable and will go a long way towards forwarding research efforts for improving the lives of individuals with cerebral palsy.” Tringali added.

From left with the family dog are Elena Delle Donne and siblings Gene and Lizzie

The study, which will take place at the AI DuPont Hospital for Children in Wilmington and the University of Delaware in Newark, will examine the effect of Botox and the low level use of vibration on muscle tone, bone and physical activity in children with spastic CP. For more details about the study criteria, visit http://tinyurl.com/bvketpt.

CPIRF Board Member, Rich Donovan

CPIRF board member Rich Donovan, CEO of Fifth Quadrant Analytics, NYC,  is a key contributor to a pioneering business school case study profiling the disability market for Columbia Business School, Donovan’s alma mater. His schooling, business acumen, and Donovan’s personal experience as an individual with Cerebral Palsy, have made him a world-renowned expert in the convergence of people with disabilities and corporate profitability. His work enables companies to transform disability compliance into an opportunity to innovate, grow and drive profitability. This particular case study teaches students about insights and innovation in the retail space inspired by people with disabilities. “Rich’s contributions to Columbia Business School, to our organization and to the larger disability community are immeasurable” said CPIRF CEO and President Glenn Tringali.” More details follow:

Fifth Quadrant Analytics

Columbia Business School Releases Case on Disability Market 

New York, NY - April 9, 2013 -  Columbia Business School has produced a pioneering business school case study profiling the disability market. The case examines how large global brands can create value by engaging people with disabilities (PWD) as consumers and Lead Users that drive innovation for all. Columbia CaseWorks engages Columbia Business School faculty to develop cases and teaching tools for use in Columbia classrooms and in business schools throughout the world. Olivier Toubia, the Glaubinger Professor of Business, developed this case in conjunction with Fifth Quadrant CEO Rich Donovan and graduate student Nithya Ramon to illustrate the “Lead User Method” in market research. The case is available to schools and businesses globally as a tool to frame a new market and approach innovation from a new perspective.”This is an excellent example of leaders in business and education coming together to provide insight and rigor to the disability market.” said Fifth Quadrant Analytics CEO Rich Donovan “Congratulations to Columbia Business School for blazing a trail for others to follow. “The case abstract is on the CaseWorks site here - faculty at accredited universities may register on the site; all others may obtain a sample version of the case by contacting CaseWorks directly at ColumbiaCaseWorks@gsb.columbia.edu.

Abstract

In early 2012, supported by a seed grant from PepsiCo, Nithya Raman, then a masters student in marketing at Columbia Business School (CBS), partnered with Rich Donovan, CBS ’02, a world-renowned expert in the convergence of PWD and corporate profitability. Together, they framed a lead user study to gain PWD-inspired insights into innovation in the retail space. In this case, students learn of past applications of the lead user method to achieve breakthrough innovation and the step-by-step process by which Raman framed and carried out her study.

About Fifth Quadrant Analytics

Fifth Quadrant Analytics’ Return on Disability Ratings Reports helps companies understand their performance across disability factors that are linked directly to profitability. In addition to rating reports, Fifth Quadrant Analytics’ produces the Return on Disability Indices for the U.S. and Canada markets. These equity indices recognize public companies that are outperforming in the disability market. The RoD US 100 and the RoD Canada 50, are published daily by Bloomberg LP.

About Columbia CaseWorks

Columbia CaseWorks develops teaching cases and materials for use in Columbia Business School classrooms. All material is closely tied to and based on the research and expertise of Columbia’s world-class faculty. The program leverages the energy, creativity, and intellectual capital of the School and provides a bridge between theoretical and practical business knowledge. Columbia CaseWorks provides funding and staff support for the development of new cases and teaching materials.

As featured in The Star: Canada by: Diana Zlomislic News reporter, Published on Sun Mar 31 2013

A simple device invented by Johns Hopkins students could, with the help of a Canadian grant, become a lifesaver in the developing world.

The “Cooling Cure” is an inexpensive basket in a clay pot that allows for the cooling of oxygen-deprived newborns to dramatically lower the risk of cerebral palsy. Photo courtesy of Johns Hopkins University.

Putting a baby inside a flower pot is generally not a good idea, no matter how adorable it might look on Instagram. But a group of Canadian neuroscientists and a team of creative undergrad students in the U.S. are convinced it could be just the trick for saving millions of newborn lives.

Using simple, relatively cheap items, including a clay pot, a burlap basket, sand and triple-A batteries, biomedical engineering students at Baltimore’s Johns Hopkins University invented a low-tech, $40 device to cool oxygen-deprived babies at birth, potentially sparing them from cerebral palsy or even death. It’s a device that Canada’s top brain doctors say could be a game-changer in developing nations that can’t afford the $12,000 baby-cooling equipment found in advanced hospitals.

So what started out as a credit for a class project is now being considered for a quarter-million-dollar grant from Grand Challenges Canada, a federally funded, not-for-profit organization “dedicated to supporting bold ideas with big impact in global health.”

The Johns Hopkins students’ “Cooling Cure” has shown promising results in animal trials, reducing the body temperature of piglets by the required three degrees to the point of hypothermia, at which point they are stabilized and then gradually rewarmed to a normal core temperature. It’s the same concept used in high-tech — and expensive — cooling devices.

The original prototype used two clay pots, one inside the other. The interior pot held the piglet dry while the space between the outer and inner pots was packed with a mix of sand, urea-based cooling powder and water.

The device works on the principle of evaporative cooling: Water slowly evaporates through the outer pot’s porous surface, drawing heat out of the inner pot so that the baby nestled inside it is gradually cooled down.

Dr. Michael Shevell, pediatrician-in-chief at the McGill University Health Centre, is so excited about the device that he wrote the grant proposal himself when he heard about the project from an American colleague.

“It could change the world by reducing the incidence of cerebral palsy in underdeveloped countries by approximately 40 per cent,” said Dr. Michael V. Johnston, a Johns Hopkins neurology professor who advised the students.

Johnston and Shevell met through a Canadian group called NeuroDevNet, a network of researchers who study children’s brains. Johnston, who sits on the group’s scientific advisory board, was telling his peers about the invention when, as Shevell explained it, “light bulbs went off.”

About four million children around the world, most in poorer countries, are born each year oxygen-deprived. The condition, called asphyxia, can occur when the umbilical cord is knotted, generally as a result of anemia, maternal malnutrition or unskilled delivery. If the baby survives, it may suffer brain-damage disorders such as cerebral palsy.

Scientists have discovered that gradually cooling the newborn within the first six hours, effectively reducing brain inflammation, can significantly lower rates of mortality and long-term disability. Most major health-care centres in North America have neonatal intensive care units that provide high-tech, controlled cooling.

But in places like South Africa, Egypt and Uganda doctors often have only fans, ice blocks and cold water bottles, which can end up doing more harm than good.

Last August, student John J. Kim, one of the Cooling Cure’s inventors, visited hospitals in India to get feedback on the device. Doctors in Mumbai and Pune suggested replacing the interior clay pot with a more durable, less expensive burlap basket lined in plastic, which Kim has since done.

The refined device includes two thermal probes connected to a microprocessor running on two triple-A batteries, which track the baby’s skin and internal temperature. If the baby is too hot, an LED light flashes red, signaling to a health care worker or family member to add water to the sand to help cool the child. If the light flashes green, the baby is too cold, and the caregiver should lift up the child.

“It’s made to be simple and it’s made to be used, under direction, by the (baby’s) family,” said Johnston, who is also chief medical officer of the Kennedy Krieger Institute, a Baltimore centre that helps children and adolescents with disorders of the brain, spinal cord and musculoskeletal systems.

A grant from Grand Challenges Canada would allow the Johns Hopkins students to begin human clinical testing in Bangladesh and India. A group will be visiting the countries this summer to meet with health officials and discuss plans to construct the cooling devices locally.

Grand Challenges Canada will announce the grant recipients of its Saving Brains Program in May.

This You Tube video was produced by CPIRF Board Member Jean-Louis Lelogeais’s daughter Marissa, who has Cerebral Palsy. Marissa is the “Maris” in the title, “Maris and the Merry Rockers,” and she can be seen singing and dancing throughout the video. According to her dad, Jean-Louis Lelogeais, “This is Marissa’s first video. She’s my hero and inspiration.  I can’t believe that she will be graduating from the Berklee School of Music this May!  What an amazing journey it has been.”  We hope you enjoy this video.

Please see the following information for a one-day conference on CP Updates and Specialty Care Management at the Weinberg Family Cerebral Palsy Center at Columbia University. This Center at Columbia is a site the CPIRF is helping to fund.

Join the leadership team of the Weinberg Family Cerebral Palsy Center at Columbia University and United Cerebral Palsy of NYC for a one-day conference dedicated to an in-depth examination of the environmental, physical and communication challenges that accompany Cerebral Palsy and complex care patients into adulthood.

This conference will provide a core curriculum for the Specialty Care Management of patients with Cerebral Palsy and will present updates in specific specialty areas of Stem Cells, Urology, Oral Health and Pain Management.

At the conclusion of the activity, participants will be better able to:

• Recognize manifestations/types of Cerebral Palsy
• Summarize and apply the GMFCS scale
• Discuss challenges to expect during the exam (physical, cognitive, communicative)
• Define and address barriers to effective care in complex patients
• Recognize the correct coding that is essential to building a Cerebral Palsy registry

Morning Session Core Curriculum for Providers only:  8:00 am – 12:30 pm

Afternoon Session for Providers and Families:  1:00 pm – 5:00 pm

Location:

Naomi Berrie Diabetes Center at Columbia University
1150 St. Nicholas Avenue at 168th Street, Main Level
New York, NY  10032

Parking is available at a fee.

This Conference will be Streaming Live and Archived for Future Views – On-line Registration Required. Seating is limited, so register today.

Providers: $100  (lunch is provided for morning session participants)
Non-Clinical Patients and Family Members:  $30

Register by mail. Send your check made payable to Columbia University.

Memo Line:  Weinberg Family CP Center
Include your contact info to reserve your seat. Indicate morning and/or afternoon sessions.

Mail to:
Weinberg Family Cerebral Palsy Center
3959 Broadway, Suite 8 North
New York, NY  10032
Phone:  212-305-2700
Email:  mb2581@columbia.edu

Morning Session

Who Should Attend:  Medical/surgical specialists, medical students, residents, physical and occupational therapists, and orthotists.

The morning session is devoted exclusively to Specialists who wish to learn how to maximize their ability to perform thorough exams for their patients with Cerebral Palsy. Speakers will provide an in-depth understanding of the environmental, physical and communication challenges that accompany Cerebral Palsy and complex care patients into adulthood.

Faculty  

Joseph P. Dutkowsky, MD, Associate Medical Director, Weinberg Family Cerebral Palsy Center
David P. Roye, Jr., MD, Executive Medical Director, Weinberg Family Cerebral Palsy Center
Vincent Siasoco, MD, MBA, Medical Director, United Cerebral Palsy of New York City

Afternoon Session

Who Should Attend: Medical/Surgical Specialists, Medical Students, Residents, Physical and Occupational Therapists, Orthotists, Patients, Family Members and Caregivers

The afternoon session is packed with speakers bringing updates for physicians, clinicians, caregivers, family members and patients.  Guest speakers include Stem Cell expert Dr. Michael Fehlings and Pain Management expert Dr. Darcy Fehlings.  Other topics selected to improve health and understanding of co-morbidities are:  Urology, Oral Health and Hip Disease.

Faculty  

Andrew Combs, RPA-C, Pediatric Urodynamics
Gregory Bunza, DDS, Dentistry
Darcy Fehlings, MD, Developmental Pediatrics
Michael Fehlings, MD, Neurosurgery
Joshua Hyman, MD, Pediatric Orthopaedics

Accreditation Statement:

This activity has been planned and implemented in accordance with the Essential Areas and policies of the Accreditation Council for Continuing Medical Education through the joint sponsorship of the College of Physicians and Surgeons of Columbia University and United Cerebral Palsy. The College of Physicians and Surgeons of Columbia University is accredited by the ACCME to provide continuing medical education for physicians.

AMA Credit Designation Statement:

The College of Physicians and Surgeons designates this live activity for a maximum of 7.5 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

Occupational Therapists CEU: A certificate of attendance for up to 7.5 contact hours of educational activity will be awarded to registrants upon completion of the seminar.

Orthotists CEU: This program has been approved for up to 6.5 credits through the American Board for Certification (ABC).  Full participation in this program is required to be eligible for the full amount of credits.

Physical Therapists CEU: Columbia University is approved by the New York State Education Department’s State Board for Physical Therapy as an approved provider of continuing education for physical therapists and physical therapist assistants. A certificate of attendance for 7.5 contact hours of educational activity will be awarded to registrants upon completion of the seminar.

The cerebral palsy and rehabilitation therapy community lost one of its most revered and influential  individuals with the passing of Dr. Jacquelin Perry at the age of 94 on Monday, March 11, 2013. Dr. Perry was one of the early pioneers and champions of gait research and a past recipient of CPIRF’s Isabelle and Leonard H. Goldenson Award in Technology. Dr. Perry remained active in the field of gait research therapy right up until the time of her death. She was a legendary figure whose important work will continue to live on and benefit so many others.  

Thanks to our friends at Reaching for the Stars (www.reachingforthestars.org), Senate Resolution 89 has passed to once again declare March 25th as National Cerebral Palsy Awareness Day for 2013. This passed last night in the 112th Congressional session at 10:35 pm.

A child with cerebral palsy playing on a merry-go-round. VIKTOR DRACHEV/AFP/Getty Images

by Shanna Freeman as published 02/14/13 06:39 in Discovery Health.

When you hea­r the words cerebral palsy (CP), you might think of someone who’s physically disabled. If you’ve ever known someone with CP, he or she may have used a cane, braces, a walker or a wheelchair to get around. But in reality, there might be more people in your life with cerebral palsy — you just don’t know it because they’re only mildly affected. They seem “normal” to you, but maybe you’ve noticed that they’re very uncoordinated or walk on their toes sometimes.

The image of a person in a wheelchair is just one of the many misconceptions surrounding the group of disorders known as cerebral palsy.

Cerebral palsy isn’t a disease; it’s an umbrella term for several different related conditions or disorders that cause problems with movement. The first part of the name “cerebral palsy” refers to the part of the brain originally thought to be affected: the cerebrum (although we now know that it affects other parts of the brain as well). “Palsy” refers to the involuntary shaking, stiffness, lack of feeling and paralysis in body parts. Cerebral palsy isn’t contagious and it doesn’t get worse over time, although some symptoms can lead to secondary conditions.

People with cerebral palsy have an injury to the brain that occurred during pregnancy, during childbirth or shortly after childbirth. Damage to the brain is irreversible, which is why cerebral palsy can be treated and managed but not cured. About 8,000 children are born with it every year, and there are currently more than 750,000 children and adults in the United States living with CP [source: United Cerebral Palsy].
Let’s start by looking at the many potential causes of cerebral palsy.

Cerebral Palsy Causes

Cerebral palsy occ­urs when a child’s brain is injured and permanently damaged. About 70 to 80 percent of the time, this damage happens sometime during pregnancy. Complications during childbirth account for 5 to 10 percent of all cerebral palsy cases, with the rest of the cases stemming from damage that occurred after birth up to age 2 or 3 [source: Wu]. There’s no way of knowing exactly what caused a specific case, but researchers are aware of several conditions that impact the blood flow, and therefore the oxygen flow, to the baby’s brain and cause the brain damage specific to CP. We’ll start with looking at the cerebral palsy causes that happen during pregnancy.

Sometimes, cerebral palsy occurs when the baby’s brain simply doesn’t develop properly due to a genetic disorder or other problem in the womb. However, sometimes diseases, infections or other conditions carried by the mother are a factor. Mothers with conditions such as diabetes and epilepsy have a higher risk of having a baby with cerebral palsy. The same is true of mothers who acquire infections like rubella (German measles), toxoplasmosis (a parasite), kidney infections or herpes. Drinking alcohol, smoking and taking certain drugs during pregnancy can also cause the brain damage that leads to cerebral palsy.

There are also some conditions specific to pregnancy that can cause CP. Preeclampsia, a disorder that causes highbloodpressure, can affect the blood flow in the umbilical cord and placenta and deprive the fetus of oxygen. The same is true for other placental conditions like abruptio placenta, when the placenta becomes detached from the uterine wall. Rh factor incompatibility, which happens when the mother’s blood type is positive and the baby’s is negative (or vice versa), can result in the baby being jaundiced upon birth. Babies with severe jaundice who don’t receive proper treatment are susceptible to a specific type of brain damage called kernicterus.

Birth injuries account for some cases. If labor is prolonged and the baby gets “stuck” in the birth canal, or if there’s an emergency C-section, babies are at a higher risk of experiencing a brain injury that can lead to cerebral palsy. The same holds true for breech births, prolapsed cords (when the umbilical cord goes below the baby in the birth canal) or the doctor’s use of forceps during delivery.

About half of all children with cerebral palsy are born prematurely (at less than 37 weeks) and weigh less than 3.3 pounds (1,510 grams) at birth. Premature babies are susceptible to a host of complications and infections that can cause cerebral palsy. One of these is intraventricular hemorrhage (IVH), or bleeding in the brain. If the bleeding is severe enough to cause swelling, pressure on the brain can lead to damage. Premature babies can also have brain damage due to breathing problems — which keeps enough oxygen from reaching the brain — and poor blood circulation in general.

But it’s not just babies in danger. Children can acquire cerebral palsy as older infants or toddlers due to:

• A physical head injury, such as hitting their head after falling off a bicycle
• Near drowning or choking on toys or food (which can cut off the brain’s oxygen supply)
• The form of child abuse known as shaken baby syndrome
• Severe infections of the brain such as meningitis

Types of Cerebral Palsy

Generally, cerebral palsy is diagnosed by the time a child is 2 or 3 years old. Doctors perform a detailed physical examination and look for certain signs. For example, some children with cerebral palsy have very weak muscles, or very tight or stiff muscles. They may also have poor or exaggerated reflexes, poor posture and difficulty balancing. Children with CP may drag one leg when they crawl or walk, walk on their toes, or “scissor” their legs (cross them at the knee) when they walk or get picked up.

After the initial diagnosis, the doctor often suggests a brain imaging scan — an MRI, CT scan or ultrasound. A brain scan might show the cause as well as the type and severity, but many children with mild cerebral palsy have normal brain scans because their area of brain damage is likely too small to be detected.

There are three basic types of cerebral palsy: spastic, athenoid/dyskenetic and ataxic. These types are differentiated by their symptoms, which often reflect the area of the brain that is damaged. Most — about 70 to 80 percent — of people with cerebral palsy have spastic cerebral palsy. This means that they have brain damage in the motor cortex or the corticospinal tract (the bundle of nerve fibers between the cerebral cortex and the spinal cord).

People with spastic CP have mobility issues due to their rigid muscles, which may also twitch involuntarily. There are three subtypes of spastic CP:

• Quadriplegia - all four limbs and the entire body are affected. Some children with this subtype also experience seizures and tremors, and they’re often not able to walk or talk at all. This is the most severe form of CP, leaving many children intellectually disabled.
• Hemiplegia - one side of the body is affected. If it’s the right side, that typically means that the brain is damaged on the left side. People with this type may require braces, and the limbs on their affected side may not grow at the same rate as the unaffected limbs. They are usually able to walk.
• Diplegia - the lower part of the body is affected, which can result in leg “scissoring” and toe walking. Many people with this subtype have crossed eyes and generally poor vision.

The second most common type of cerebral palsy is athetoid/dyskenetic. A person with athetosis has slow, writhing, involuntary movements, especially in the arms, while dyskinesia means that these movements can be repetitive, almost like a tic. People with this form of CP have varied muscle tone. Sometimes their muscles are stiff and rigid, and other times they are loose and floppy. Athetoid/dsykenetic CP results from damage to one or more of these areas of the brain: the basal ganglia, the corticospinal tract and the motor cortex. People with athenoid/dyskenetic CP may have difficulty walking, talking and eating, sitting upright, and performing basic motor skills.

Ataxic CP is the least common diagnosis (about 5 to 10 percent of all cases) and results from damage to the cerebellum. People with this type of CP have low muscle tone and difficulty coordinating their muscles to perform fine motor skills such as writing. They also usually have difficulty balancing while walking, and walk with their feet spread widely apart. A specific type of tremor known as an intention tremor is common with this type of CP. This means that a voluntary movement, such as reaching for an object, produces a tremor in the arm that gets worse as the hand gets closer to the object.

Some people with CP have symptoms of one or more of these three types and are said to have mixed CP.

There is no cure for cerebral palsy, but there are many different treatments and therapies to help manage the symptoms. We’ll explore these next.

Cerebral Palsy Treatment

Once a doctor diagnoses a child with cerebral palsy, he or she discusses a course of treatment with the parents. Early intervention gives the child the best chance of learning how to manage his or her impairments and find alternate ways to perform tasks that may be challenging.

Even when children are diagnosed with CP as infants, they begin physical therapy as soon as possible to strengthen their muscles. Some people with CP suffer from muscle contractures, which occur when the muscles shorten due to spasticity. Stretching the muscles can keep this from happening. It also gives children a better chance of sitting, walking and performing other physical tasks as efficiently as possible. Many people with CP also receive massages and learn yoga positions to help stretch their muscles and keep them flexible.

Other therapy can also be helpful, depending on the child’s particular type of CP. For example, children with athetoid/dyskenetic CP often have trouble breathing, speaking and eating, so working with a speech/language pathologist can help them to strengthen their facial muscles and speak clearly. Some children with CP use alternate methods of communication, such as Blissymbols, a symbolic writing system, or computerized voice synthesizers. Occupational therapy can help children with basic skills like bathing and feeding themselves.

There are some drugs that people with CP can take to decrease their spasticity and limit their tremors, such as the muscle relaxer Benzodiazepine, but they aren’t always effective and may have unwanted side effects. Recently, doctors have begun injecting Botox into tight muscles to relax them. Some children with severely spastic CP have pumps surgically implanted in their abdomens as young adults, which continuously deliver a stream of an antispasmodic drug called Baclofen.

Children with spastic cerebral palsy sometimes have surgery to loosen tight muscles and joints. Over time, spastic muscles can also cause bone deformities, which require surgery to fix. For example, sometimes the tibia, or shin bone, becomes permanently twisted, which can lead to further difficulties in walking. A surgeon can cut the bone and realign it. Some people with severe spasticity end up having surgery that involves identifying and cutting nerve fibers, called selective dorsal rhizotomy, which can improve their mobility. It’s usually a last resort.

There are also alternative therapies available for people with CP. Biofeedback involves recording the body functions of a patient, including muscle tension, and conveying this information to the patient. The idea is that they can control some of these unconscious functions once they are made aware of them, but its effectiveness hasn’t been proven in CP patients.

Cord blood therapy has been touted as a possible cure for cerebral palsy, but there haven’t yet been scientific trials to prove its effectiveness. The possibility got a boost, however, when the family of a 2-year-old child named Dallas Huxtell appeared on the Today Show in March 2008. They claimed that treating Dallas with his own stemcells has caused a reversal of his cerebral palsy symptoms. Prior to his treatment, Dallas had very poor muscle tone and motor skills and was behind in his development. Now his doctors state that he may have no symptoms of CP at all by the time he is 7 years old. This is just one case, but it has given new hope to people with CP.

Dr. James Blackman, Medical Director of CPIRF, and colleagues from the Norwegian University of Science and Technology recently published their research on the role of the Apolipoprotein E (APOE) gene in determining individual variability in response to brain injury during the fetal, newborn, and early infant stages of development. It appears that individuals with the epsilon 4 version of the APOE gene are at greater risk for epilepsy, more severe fine motor impairment, and dependency on a gastrostomy feeding tube. It is hoped that insights gained from this and other genetic studies in cerebral palsy will eventually lead to gene therapy.

The complete article is available online: Lien E, Andersen GL, Bao Y, Gordish-Dressman H, Skranes JS, Vik T, Blackman JA. Apolipoprotein E polymorphisms and severity of cerebral palsy: a cross-sectional study in 255 children in Norway. Dev Med Child Neurol. 2013 Feb 5.