The NIH has a new program entitled the NIH Blueprint for Neuroscience Research. This program is designed to turn discoveries into new drugs for nervous system diseases by providing a “virtual pharma” with resources, expertise and funding to advance promising compounds from chemical optimization through Phase 1 clinical testing. The network is structured so that the PI can retain ownership of the intellectual property for drugs developed within it. Disorders of interest include, but are not limited to, neurological, psychiatric and developmental disorders, dementias of aging, diseases and disorders of the eye or ear, and drug and alcohol dependence and addiction. The ultimate goals of this Neurotherapeutics Grand Challenge are to produce at least one novel and effective drug for a nervous system disorder that is currently poorly treated and to catalyze industry interest in novel disease targets by demonstrating early-stage success.
Entry requirements are the following:

• At least one small molecule compound with strong evidence of biologic activity in a nervous system disease assay.
• A robust, moderate throughput assay of biological activity suitable for testing compounds generated in an iterative medicinal chemistry effort.
• Secondary bioassays and models sufficient to evaluate the potential of a drug candidate for the intended indication.

To apply, go to
http://grants.nih.gov/grants/guide/rfa-files/RFA-NS-11-002.html
The deadline is August 10, 2010

Contact Dr. Rebecca Farkas at farkasr@ninds.nih.gov or (301) 496-1779
for more information regarding this new initiative

The Cerebral Palsy International Research Foundation (CPIRF) Board of Directors is pleased to welcome and announce the appointment of Mr. Glenn R. Tringali as Chief Executive Officer effective April 13, 2010. Since 1975, Mr. Tringali has spent his entire professional career in the nonprofit community, having held senior administrative and fund development positions with some of the country’s most prominent health agencies, including the March of Dimes, the Juvenile Diabetes Research Foundation, and Autism Speaks. “We are delighted to have the expertise and experience of Glenn to help lead our efforts at CPIRF going forward” said Paul Volcker, Chairman of CPIRF.

Most recently, Mr. Tringali was the Chief Development Officer at the Cancer Research Institute and from 2001-2008, previously served the autism community, first as CEO of the National Alliance for Autism Research prior to leading the organization’s successful merger with Autism Speaks in February, 2006 where he was named Executive Vice President.

CPIRF CEO – Glenn R. Tringali

“I am incredibly honored and excited to be joining the Cerebral Palsy International Research Foundation. The national and global research and education programs we are funding are critically important. With an estimated 1 million children and adults with CP in our country, the need for supporting our efforts has never been greater”.

CPIRF is the nation’s preeminent private organization dedicated to the prevention and treatment of Cerebral Palsy and related developmental disorders. In its fifty-five year history, CPIRF has provided more than $50 million to support research and educational activities in the biomedical and clinical sciences.

Dr. John Hsu is the 2010 winner of the Weinstein-Goldenson Medical Science Award. This award is presented annually to a clinician-scientist for outstanding contributions in medical research which enhance the lives of individuals with cerebral palsy and their families.

John Hsu, MD, F.A.C.S.

Dr. Hsu is an Emeritus Clinical Professor in the Department of Orthopedics, at the University of California, Keck School of Medicine. He is the attending orthopedic surgeon at the Muscle Disease Clinic, Rancho Los Amigos National Rehabilitation Hospital and at the Children’s Fracture Clinic at the Orthopedic Hospital in Los Angeles, CA.  He is a member of the American Orthopedic Association, the American Academy of Orthopaedic Surgeons, the American College of Surgeons and the Pediatric Rehabilitation Association among others. Dr. Hsu has over 120 publications and written numerous book chapters in the field of orthopedic surgery interventions for neuromuscular disorders such as cerebral palsy and Duchenne muscular dystrophy. Dr. Hsu has had a long and distinguished career in caring for children and adults with cerebral palsy. He will be presented with the 2010 Weinstein-Goldenson Medical Science Award at the Transformational Technology Workshop to be held on September 2-4, 2010 in Downey, CA.

Dr. Terrance Sanger is the 2010 winner of the Isabelle and Leonard H. Goldenson Technology and Rehabilitation Award. This award is presented annually to a scientist for outstanding contributions in the development and use of technology and rehabilitation methodologies that enhance the quality of life for individuals with cerebral palsy and other disabilities and their families.

Terrance Sanger, MD, PhD

Departments of Biomedical Engineering, Neurology, and Biokinesiology and on the medical staff at the Children’s Hospital of Los Angeles, Department of Neurology. He graduated from Harvard Medical School Division of Health Sciences and Technology with a medical degree in 1993 and from the Massachusetts Institute of Technology with a doctorate in Electrical Engineering and Computer Science.  Dr. Sanger’s primary research goal is to understand and prevent adverse effects of childhood brain disorders on motor development. His major research areas in computational neurosciences and neural networks include the mathematical description of dystonia and abnormal human movement; mathematical models of abnormal basal ganglia function and neural networks of normal and disordered learning. His major clinical research areas include tools for quantification and diagnosis of dystonia in children, the role of botulinum toxin in the modification of learned motor patterns, and feedback retraining of multiple-muscle patterned movement. He is currently funded by the NIH to use high-speed programmable logic devices to simulate the development of long and short-latency reflexes and the evolution of spasticity and dystonia in children with early brain injury. He has had past research funding from NIH, CPIRF, the Lucile Packard Children’s Hospital, the Allergan Corporation,  the Pfizer Pharmaceuticals Group and  Elan Pharmaceuticals. He has published 52 papers in peer reviewed journals and has been invited to present at scientific meetings and conferences on well over 32 occasions.  Dr. Sanger will be presented with the Isabelle and Leonard H. Goldenson Technology and Rehabilitation Award at the 2010 American Academy of Cerebral Palsy and Developmental Medicine Annual Conference in Washington DC on September 24th in Washington, DC.

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.

Save the date
November 5 – 6, 2010

Themes in Neurorehabilitation:
Cerebral Palsy Across the Lifespan

Presented by Maryland Center for Developmental Disabilities at Kennedy Krieger Institute and Kinetic Connections Johns Hopkins Medical Institutions • Baltimore, Maryland

Learn about the current best evidence-based practices for the treatment of medical, rehabilitative and psychosocial conditions that may occur in individuals with cerebral palsy at each state of life.

Keynote Speakers:
Janice Brunstrom-Hernandez, MD, Director, Pediatric Neurology Cerebral Palsy Center, St. Louis Children’s Hospital
Mindy Aisen, MD, CEO, Cerebral Palsy International Research Foundation

Registration information available in mid-May at www.resourcefinder.kennedykrieger.org
Who Should Attend:
Community program coordinators, counselors, educators, nurses, nutritionists/ dietitians, occupational therapists, parents and individuals with disabilities, physical therapists, psychologists, social workers, and speech & language pathologists.

Conference Sessions:

November 5
• Augmentative Communication Strategies

• Coping with a New Diagnosis/Accessing Care

• Education Issues

• Neuroimaging as a Guide to Diagnosis

• Nutrition/Feeding

• Strategic Planning for Therapeutic Interventions

November 6
• Community Integration/Socialization

• Disability & Sexuality

• Quality of Life

• Transition Issues

• Wellness/Medicine/Aging

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

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!