CPIRF is proud to co-sponsor a two-day workshop entitled ‘Themes in Neurorehabilitation: CP Across the Lifespan’ at the Kennedy Krieger Institute in Baltimore, MD on November 5 and 6^th 2010. Dr. Mindy Aisen, CPIRF’s Medical Director, will be giving the keynote address. Come learn about the best-evidence practices for the treatment of the medical, rehabilitative and psychosocial conditions that may occur in individuals with cerebral palsy at each stage of life. Educators, nurses, physical therapists, occupational therapist, speech & language pathologists, community program coordinators, psychologists, social workers, counselors, parents and individuals with disabilities are encouraged to attend.

Register at www.resourcefinder.kennedykrieger.org

March 2010 Fact Sheet

Leading neuroscientists, clinicians, radiologists, neurobiologists, and pediatric neurologists came together for a symposium  entitled “Injury to the Preterm Brain and Cerebral Palsy” in conjunction with the 37th Annual Meeting of the Child Neurology Society on November 5th, 2008.  The symposium  was supported by the National Institutes of Health, the Child Neurology Society, the Kennedy Krieger Institute, and the Cerebral Palsy International Research Foundation. Recently a summary of the symposium was published in the Journal of Child Neurology by Michael Babcock, Felina Kostova and Drs. Donna Ferriero, Michael Johnson, Jan Brunstrom, Henrik Hagberg and Bernard Maria. The first session was on clinical aspects of injury to the preterm brain.

Current Knowledge of Preterm Injury

Dr. Joseph Volpe of the Children’s Hospital in Boston discussed the current state of knowledge regarding injury to the preterm brain. Of the 60,000 infants born each year in the US weighing less than 1,500 grams, up to 10% develop motor dysfunction and up to 50% have cognitive, behavioral and social deficits. Due to advances in neonatal care, 90% of these extremely low birthweight infants survive.  Periventricular leukomalacia (PVL) is the most common pathology, occurring in up to 50 % of these infants.  PVL has two components, one being a focal component, the other being a diffuse cell-specific  component characterized by injury to the preoligodendrocyte (precursor of the cell responsible for myelinating the neuronal axon), and the occurrence of astrocytosis, and microgliosis (nerve cells that are activated after a CNS injury).  Injury to preoligodendrocytes can result in cell death or loss of cell processes.  After insult, there is a replenishment of preoligodendrocytes that are unable  to mature into oligodendrocytes capable of myelination.

It is believed that there are interacting factors that contribute to PVL  in the premature infant . They include cerebral ischemia, infection and inflammation and a maturation dependent vulnerability of the preoligodendrocyte. Premature infants are susceptible to ischemia because of impaired vascular autoregulation, generating reactive oxygen and nitrogen species. These reactive species accumulate and cause injury in the preoligodendrocytes as they have not yet acquired an antioxidant defense system.  In addition, there is also clearly a link between infection/inflammation and PVL.  Infection and inflammation are associated with release of pathogen-associated molecular products that activate microglia. These activated microglia lead to production of free-radicals that cause injury to the preoligodendrocyte as well.

Thus there are upstream mechanisms of ischemia, reperfusion, and inflammation that activate downstream mechanisms of excitotoxicity (pathological process by which nerve cells are damaged and killed by glutamate and similar substances) and free radical attack that can all potentially be targeted for prevention of injury.  There are many animal studies demonstrating efficacy of various compounds blocking action of reactive species thus preventing injury and many of these appear to be ready for trials in premature infants.

Neuroimaging in Cerebral Palsy

Dr. David Edwards of the Hammersmith Hospital in London, England discussed recent technological advances and clinical usefulness of imaging.  He stated that conventional MRI does not have a lot of value in predicting health outcomes in premature infants.  Another type of imaging, called diffusion tensor imaging (DTI) has shown promise in that it can reveal  the structural integrity of white matter as well as white matter tracts throughout the brain demonstrating connections between various  regions.  Using DTI and tract-based spatial statistics, researchers have demonstrated a good correlation between health outcomes of 2 years old with white matter lesions and measures of microscopic white matter integrity.  DTI has revealed that in children with white matter lesions, not only is there decreased volume of the thalamus, but there is decreased connectivity between the thalamus and the cortex.  It is believed that use of DTI with functional MRI can be combined to give very precise structure-function relationships of various regions of the brain.

Fetal Inflammatory Response

Dr. Olaf Dammann of the University of Hanover in Germany discussed the fetal inflammatory response and brain injury.  It is now believed that premature birth is sometimes the result of some exposure during pregnancy (such as intrauterine infection) and that this exposure causes white matter damage in the infant.  Thus prematurity and cerebral palsy are associated but not necessarily causal in some instances.  In addition, it is now believed that it is not exposure to the pathogen itself that causes the damage, but rather exposure to substances produced by the fetal inflammatory response to the pathogen.

Further, Dr Dammann stated that it is likely that fetal white blood cells are involved in brain injury by going through the fetal blood-brain barrier once activated by cytokines, which in turn, activate microglia and astrocytes that damage the preoligodendrocytes.  He also suggested that brain injury and long-term disability results not just from a single event, but from an ongoing exposure to persistent inflammation as evidenced by the presence of a marker of inflammation present in the blood of children with cerebral palsy at age 10.

CPIRF is pleased to co-sponsor the 2010 Association of Children’s Prosthetic-Orthotic Clinics’ Annual Meeting at the Sheraton Sand Key Resort in Clearwater Beach, FL June 2^nd through the 5^th. Click here for meeting agenda. CPIRF’s Medical Director Dr. Mindy Aisen and orthopedic surgeons Drs. Laura Tosi and Kevin Murphy will hold a symposium entitled ‘ . Cerebral Palsy: Pediatric to Adult Transition’ on Friday June 5^th.

To learn more about the Association of Children’s Prosthetic-Orthotic Clinics (ACPOC) go to their website at www.acpoc.org

If you want to attend the upcoming annual meeting call (847)698-1937 or email at raymond@aaos.org

Many thanks to Heather Fawcett for organizing both a 5k and a kids race on September 9, 2009 at Sunset Park in Pennsylvania to benefit CPIRF.  Heather belongs to a National community service organization called Alpha Phi Omega that helped her put the event together. In all, they had 45 runners and raised over $300 for cerebral palsy research.

Heather, a student at Penn State, has a form of mild cerebral palsy.  She is very grateful to have had wonderful doctors, physical therapists, and family members who have supported her  throughout her life. When she was younger, she  had trouble doing even fairly simple tasks, but thanks to her family and therapists, she completed her first marathon last year in a time of 4 hours and 26 minutes (10:13 min per mile pace).

In Heather ‘s words, ‘I just feel so blessed for all that has been given to me and I know that not all other individuals with Cerebral Palsy are as lucky as I am. That’s why I hope that someday we will be able to make the lives of those with much more severe disability be easier, so they can lead normal, happy lives. “

You too, can help promote CP awareness, by getting involved and organizing local events to benefit CP research and educational activities.  CPIRF can help by providing T-shirts, pamphlets and educational materials.

You can view the Stride for Cerebral Palsy Awareness Race website by going to: http://sites.google.com/site/strideforawareness or just www.stride4awareness.org

The New York Times recently ran a story of a 31 year –old with cerebral palsy and his remarkable response to dance lessons and muscle relaxation techniques. AOL picked up the story and interviewed our Medical Director, Dr. Mindy Aisen, about its potential usefulness as a therapy to improve function in individuals with CP.  Now, Good Morning America has done a piece on this same remarkable story of Gregg Mozgla and how he reduced his symptoms of cerebral palsy through ballet.

http://www.aolhealth.com/condition-center/cerebral-palsy/overcoming-cerebral-palsy

Here’s a link to the GMA piece: http://abcnews.go.com/video/playerIndex?id=9600885

Is Dance an Effective Therapy for Cerebral Palsy?

By Justine van der Leun

Photo: Andrea Mohin, The New York Times/Redux

Gregg Mozgala, a 31-year-old actor, used to feel inhibited by his cerebral palsy, a neurological condition that occurs when a child’s brain is damaged before the age of two and afflicts a million Americans — most often in the form of poor coordination, weak muscles, and compromised posture. But with a load of determination and the help of an unconventional choreographer, Mozgala is now set to star in an hour-long dance piece in New York City. “I have felt things that I felt were completely closed off to me for the last 30 years,” Mozgala told The New York Times. “The amount of sensation that comes through the work has been totally unexpected and is really quite wonderful.” While there is no cure for cerebral palsy, Mozgala’s success suggests that a change in approach to the condition can translate into a change in the lives and capabilities of sufferers.

Mozgala’s journey began in 2008 when he met choreographer Tamar Rogoff (pictured above doing body work with Mozgala). After seeing Mozgala play the lead in “Romeo and Juliet,” produced by Theater Breaking Through Barriers, a group composed of disabled and non-disabled actors, Rogoff was inspired to create a dance piece for him. At first, both Mozgala and Rogoff imagined a 10-minute performance: Mozgala, who then walked on his toes with his upper body thrown back, assumed he could not manage much more, and Rogoff figured she would create some basic choreography for him. But as they began to work together, her imagination and his capacities began to expand.

Rogoff, who knew little about cerebral palsy, taught Mozgala techniques to release muscular tension. She helped him locate areas of his body over which he had previously exercised no control. In agonizing and illuminating sessions, they worked together to increase his range of movement, employing dance and stretching techniques, and finding his true physical limits. Soon enough, Mozgala was able to stand up straight, to place both feet on the floor, as well as to feel his Achilles tendon, which he had never before done. He called these revelations “eureka moments” in the New York Times interview.

“There are pre-existing structures in the brain that are very receptive to music, rhythm, and moving to music, which is why at a rock concert, everyone is swaying,” explained Mindy L. Aisen, MD, medical director of The Cerebral Palsy International Research Foundation. “The innate pleasure we get from music acted as a reinforcement for getting [Mozgala's] body re-engaged and for forging new pathways in his brain.”

Mozgala had been to physical therapists for over a decade, but his dance training was different: While before, the therapists had moved his body for him, now he learned how to move his own body. Rogoff identified some of the physical patterns he had been stuck in and gave him specific instructions on how to overcome them, both in the studio and out. His daily life has changed: His balance and strength are so improved that he rarely falls; his gait is steadier, and he is subject to fewer stares on the street. Most important, he no longer feels mentally constrained by cerebral palsy. As he told the Times: “Everybody told me there was nothing I could do,” he said. “That’s just what you hear, from the time you’re five to adulthood. Tamar gave me an option.”

According to Aisen, Mozgala’s story supports an open-minded, patient-centered approach to Cerebral Palsy and other neurological impairments. CPIRF is considering funding a dance therapy program, and at their Washington, D.C. Center, they have begun to use robotics and fun, motivational virtual games to help children use afflicted muscles. “Just as musicians have to practice to hone a motor skill, a brain that’s never had a chance to develop in areas needs the opportunity,” says Aisen. “We think we can help anyone with cerebral palsy reshape their nervous system in a way. It’s not a cure, but it is going towards a cure.”

December 2009 Fact Sheet

Federal funding (National Institutes of Health) into the prevention and treatment of cerebral palsy is very low when compared to other childhood conditions. The disparity becomes readily apparent when examined on an annual funding per new case basis. For instance, NIH funding for cerebral palsy was $29 million dollars in FY 2009 and is projected to be $29 million in FY 2010  (NIH RePORT, 2009).  Estimates of CP prevalence in the western world range from 2 to 4.4 cases per 1000 live births; and is widely believed to be increasing.  Given that there were over 4 million lives births in the US in 2005 (CDC, 2006), a reasonable estimate of the number of new cases of cerebral palsy diagnosed each year is 12,000.  Thus, on an annual basis $2400 Federal research dollars are spent for every new case of cerebral palsy.  In comparison, $93 million Federal dollars were spent on cystic fibrosis research and it is projected that $94 million Federal dollars will be spent in FY10.  In the US, there were an estimated 0.3 new cases of cystic fibrosis per 1000 live births  (National Heart Lung and Blood Institute), resulting in 4000 new cases annually.  Thus, $23,000 Federal research dollars were spent for every new case of cystic fibrosis last year, a 10-fold difference over that spent for CP research.  Go to the NIH RePORT website to see Federal funding amounts for various conditions.  HYPERLINK “http://report.nih.gov/rcdc/categories/” http://report.nih.gov/rcdc/categories/

Many childhood health conditions have been able to obtain support from the general public to support research activities.  The US Cystic Fibrosis Foundation provides $85 million annually in research support, and the Juvenile Diabetes Foundation, $156 million.  Our foundation, the Cerebral Palsy International Research Foundation is the only Foundation in the US entirely devoted to research for the prevention and treatment of cerebral palsy. Unfortunately, our  entire research budget in FY09 was only $1.6 million. Clearly, for advances in prevention and treatment of one the most common disabling conditions of childhood, cerebral palsy, more money is needed to fund the research that must to be done to decrease the number of new cases of cerebral palsy, to develop early treatments that might prevent or lessen the disability associated with brain injury and to improve motor and cognitive function in children and adults with CP.  So what can YOU do? Write your Congressman and alert them to this funding disparity! Donate to CPIRF what you can so that we can continue to fund more and better research for CP! We are the only private foundation in the US solely devoted to CP research.

CPIRF will award $30,000 to Dr. Yvonne Wu of the University of California at San Francisco and William M. Gilbert, MD at Sutter Medical Center, Sacramento, to study factors associated with the occurrence of CP in term infants. Much of this funding was raised from CPIRF’s Power Heroes Gala held last year in Los Angeles.

Her previous work found that black ethnicity is associated with a 40% increased risk of CP among term and near-term infants. In a follow up study, Wu et al confirmed her earlier finding of increased risk of CP among black infants, although the relative risk did not reach statistical significance as in the previous study. These findings are consistent with research conducted by the Centers for Disease Control. They found a higher prevalence of cerebral palsy in black 8-year old children as compared to other racial groups in three different geographical areas of the country: metropolitan Atlanta, Northern Alabama and Southeastern Wisconsin . The prevalence of CP was highest among 8 year old black children in all three regions and was 30% higher overall than the prevalence found in white non-Hispanic children.

Drs. Wu and Gilbert are going to use a database maintained by the Office of Statewide Health Planning and Development (OSHPD) of California. This database contains 10 years of birth certificate information from the whole state of California and is linked with another database maintained by the California Department of Developmental Services that contains all diagnoses of cerebral palsy in the same time period. She will test the following hypotheses: 1) Infants born to black mothers experience an increased risk of cerebral palsy that is only partially explained by increased rates of prematurity and other potential confounders; and 2) Infants born to mothers of Hispanic origin demonstrate a lower risk of cerebral palsy. Dr Wu hopes to complete her study by the end of next year.

Before his son Samuel was diagnosed with cerebral palsy, photojournalist Dan Habib rarely thought about the inclusion of people with disabilities. Now he thinks about inclusion every day. Shot and produced over four years, Habib’s award-winning documentary film, Including Samuel, chronicles the Habib family’s efforts to include Samuel in every facet of their lives. The film honestly portrays his family’s hopes and struggles as well as the experiences of four other individuals with disabilities and their families. Including Samuel is a highly personal, passionately photographed film that captures the cultural and systemic barriers to inclusion. Go to www.includingsamuel.com to learn more about the Including Samuel Project, view the film trailer and find times and dates for upcoming broadcasts on PBS of the entire film. The Including Samuel Project is part of the Institute on Disability/UCED, a non-profit 501(c)3 organization at the University of New Hampshire. The project’s mission is to build more inclusive schools and communities through curriculum, training, and outreach.

Katy Fetters is a seventeen year-old girl who has hemiplegic cerebral palsy. She lives in Orange County, California and attends Huntington Beach High School as an upcoming junior. Katy is very focused on academics at school, as she maintains a 3.9 GPA and plans to go to a four year university for English and creative writing after graduating. She is active in soccer and weight trains weekly. Growing up with CP has been a challenge, but Katy has learned to adapt to her disability. She never lets it stop her from doing anything her brothers, sisters, and peers are able to do. She takes everything step by step until she is able to excel. She learned how to ride a bike at seven years old, ran cross-country in middle school, and became “Student of the Year” in her last year of middle school. One of her greatest achievements was climbing to the top of Yosemite Falls in 2007. Katy has a twin sister who doesn’t have CP, so she tries to live her daily life as a normal teenage girl. She spends her free time with friends, loves to write poetry, and strives to lead a healthy lifestyle as a teenager with cerebral palsy. But most of all, Katy hopes to never let her disability get in the way of living her life strongly, happily, and spontaneously.

Katy has recently started a blog for teens with disabilities. Her goal for teencerebralpalsy.com is to become a place where teens can talk about any problems they face because of his or her disability. Katy knows what it is like being a little different from everyone, and so she created this website so that she can talk with others like her about daily life as a teen with CP. She hopes that other teens with CP can come to her website, and use it as an emotional outlet. These teens can talk about anything with each other, social, physical, or emotional problems, or maybe they just need some words of encouragement to achieve a goal! This website is designed so that these kids will always have a place to come to, and they will always have someone like them out there to talk to!