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

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

CPIRF supports several US based clinical research programs which explore new ways in which 21^st Century Technologies can be combined with new concepts in brain plasticity and the value of intensive repetitive motor practice to enhance and optimize neurological development. By sharing knowledge across disciplines and studying ways to use these technologies to provide an intensity of appropriate and focused therapy, we can change the future for 100’s of thousands of people disabled by motor impairments caused by brain injury early in childhood (Cerebral Palsy).

OBJECTIVE: To determine the impact of an activity-specific electrical stimulation program on paretic limb impairment, functional limitation, and ability to perform valued activities in children or adults with Cerebral Palsy and motor impairment.

METHOD:  CPIRF requests applications for studies and is offering funds up to 100 thousand dollars over a 2 year period. Applications will be reviewed for scientific merit and relevancy by the Scientific Advisory Council of the Cerebral Palsy International Research Foundation, and award decisions will be rendered by the Board of Directors.

Examples of studies which will be considered include but are not limited to: examining the impact of body weight supported treadmill training with and without electrical stimulation training: assessing strength, tone, biomechanical alignment, and gait efficiency;  incorporating a neuroprosthesis to treat foot drop, ankle spasticity and inappropriate tone in spastic hemiplegic or diplegic cerebral palsy; combining functional neurostimulation with upper or lower extremity robotics; combining functional electrical stimulation with virtual reality therapy; and combining functional neurostimulation to strengthen antagonist muscles after injectable focal antispasticity treatments are administered.

BACKGROUND:

Cerebral Palsy is damage to the brain of an otherwise healthy child before the age of two.  Until the 1990’s physicians felt that brain damage was destiny. Few therapeutic options existed to actually correct neurological damage.

Contrary to what many clinicians believe(d), the human brain has the potential for considerable plasticity. It can change its internal organization, particularly its synaptic connections, throughout a lifetime, not just during the formative years. This means that it is possible to ameliorate the effects of not only cerebral palsy, but stroke, and other brain disorders.

In patients with stroke or cerebral palsy, neuronal tissue damage occurs due to either lack of oxygen or exposure to free radicals/inflammatory agents.  The resulting neurological deficit has long been thought irreversible. But researchers have demonstrated that reversing that neurological deficit in stroke patients is possible even many years after the stroke. And recent research indicates that cerebral palsy, too, can be treated by similar means.

The brain is a learning machine, and just because it is damaged doesn’t mean that it can’t learn, and it learns motor tasks through prolonged, highly reproducible, high-intensity, interactive therapy. Many believe that it is necessary for therapists to provide a far more intense and meaningful therapy experience than is generally possible in conventional therapy programs

NEED FOR THIS RESEARCH:

Combining elements of mass practice, robotics, virtual reality, patterned neuro-muscular stimulation, and other advanced technologies, may well be the way to a future which revolutionizes the neurologic rehabilitation of children and adults with developmental disabilities.

Functional Neuromuscular Stimulation neuroprostheses, functional electrical stimulation (FES), and various emerging applications based on microsystems devices, neural engineering, neuroaugmentation, neurostimulation, and assistive technologies all hold great promise for treating children and adults with Cerebral Palsy. To date very limited data exists examining task-specific practice interventions combined with task specific practice. Although often used, an important limitation of conventional electrical stimulation is that it does not involve task-specific practice.

In this study, physicians/clinicians with expertise in Cerebral Palsy and rehabilitation research will seek to determine the impact of an activity-specific electrical stimulation program on paretic limb impairment, functional limitation, and ability to perform valued activities in people with Cerebral Palsy and motor dysfunction.

How to apply:

Please send a 1-2 page letter of intent, reviewing the fundamental elements of the study you propose, relevant information about your ability to perform the study (institutional resources, expertise of coworkers, access to the Cerebral Palsy community), a timeline and budget outline. Also include the Prinicipal Invesigator’s CV.

This should be sent to

Dr. Nancy Maher

Cerebral Palsy International Research Foundation

1025 Connecticut Avenue

Suite 701

Washington, DC

20036

Or

Scanned and emailed to Dr Maher and Dr. Mindy Aisen

nmaher@cpirf.org, maisen@cpirf.org

Full applications will be accepted until March 1, 2010.

The Cerebral Palsy Research International Foundation announced the recipients of the 2008 Weinstein- Goldenson Medical Science Award and the Isabelle and Leonard H. Goldenson Technology and Rehabilitation Science Award on September 16, 2008 at the Adults with Cerebral Palsy Workshop held in Atlanta Georgia in conjunction with the American Academy of Cerebral Palsy and Developmental Medicine annual meeting.

The Weinstein-Goldenson Award is presented by CPIRF annually to a clinician-scientist for outstanding contributions in medical research which enhance the lives of persons with cerebral palsy and their families. The Isabelle and Leonard H. Goldenson Award is presented by CPIRF annually to a scientist for outstanding contributions in the development and use of technology and rehabilitation methodologies that enhances the quality of life of persons with cerebral palsy and other disabilities and their families.

Click Picture for Bio.

Murray Goldstein, DO, MPH
2008 Weinstein-Goldenson Medical Science Awardee

Click Picture for Bio.

Robert Jaegar, PhD.
2008 Isabelle and Leonard H. Goldenson Awardee

The Cerebral Palsy International Research Foundation (CPIRF) hosted “Families of Distinction,” on Sunday night to recognize individuals and families for their commitment to educating, mentoring, improving and empowering the quality of life for people with disabilities.
The event, emceed by actor John Amos, recognized members of the Foundation’s co-founders, Isabelle and Leonard H. Goldenson and the evening’s honorees Alfred and Claude Mann, Dr. Taryn Rose, Maria Fiorini Ramirez, and Loreen Arbus (daughter of Isabelle and Leonard H. Goldenson) who have embraced a long-term commitment to the cause of Cerebral Palsy. Also receiving honors were Gary Lynn and his mother Andrea for being the “Ambassador Family” of the evening. Gary, who has CP, made a heartfelt speech about how he lives with his disability and his future goals to become a sports attorney, and enter politics.
Over $300,000 was raised during the evening in silent and live auctions. CPIRF Chairman of the Board and Honorary Dinner Chair, Paul A. Volcker spoke about the recent statistics and current breakthroughs in therapies. Proceeds benefitted cutting edge research projects focused on early diagnosis, prevention and treatment for Cerebral Palsy.
Those in attendance included Paul Volcker (Chairman of Pres. Obama’s Economic Recovery Advisory Board), Taryn Rose (fashion designer/honoree), Loreen Arbus, Frank Bennack, Jr. (Vice Chairman and CEO of Hearst Corporation), Moshe Arens (Israeli politician and former Ambassador to the US), Dr. Joshua Gleitman, Linda Kaplan Thaler, Margaret & Stephen Goldsmith (former Mayor of Indiana), James Stearns Esq., Dawn Gibbons (First Lady of Nevada), and Louis Licari (celebrity hair stylist and Today Show contributor).

CPIRF Ambassador Family Andrea and Gary Lynn

Gala Co-Chairs Linda Kaplan Thaler and Margaret Goldsmith

Honoree Taryn Rose

Honorees Claude and Al Mann and Loreen Arbus

John Amos, Master of Ceremonies

John Amos, Angela Bassett, Courtney Vance, Areva Martin, Paula Madison and Louis Gossett

The Cerebral Palsy International Research Foundation (CPIRF) Hosts a Successful “Power Heroes” Gala and Raises Money for Research

The Cerebral Palsy International Research Foundation hosted its first annual “A Celebration of Heroes” Power Heroes Gala at the Four Seasons Hotel on December 3rd. Multi-instrumentalist virtuoso, Ellis Hall, entertained while KNBC’s Beverly White emceed the reception tohonor select role models in the Hollywood community who are committed to educating, mentoring, and empowering those in need in the African American community.

Power Heroes included: John Amos, Emmy nominated and NAACP Image Award winning actor; Angela Bassett, Emmy & Academy Award nominated, Golden Globe winning actress and her husband, Courtney B. Vance, two-time Tony Award nominated actor, both of whom are authors and UNICEF Goodwill Ambassadors for the United States; Lou Gossett Jr., Emmy & Oscar award winning actor and creator of the Eracism Foundation; Paula Madison, Executive Vice President, Chief Diversity Officer of NBC Universal, and Areva Martin, Esq., Managing Partner Martin & Martin LLP, President and Co-Founder of the Special Needs Network, Inc.

Loreen Arbus, Honorary Chair and daughter of ABC Networks creator Leonard Goldenson, commenced the evening with a heartfelt explanation as to why her parents started CPIRF. She enlightened guests with facts and statistics of children born with Cerebral Palsy and highlighted some of the amazing advancements made through research, which are enabling Cerebral Palsy patients to live longer and healthier lives.

CEO and Director of CPIRF, Mindy Aisen, discussed robotic therapy and how her experience working with Christopher Reeve has contributed to the improved care and research relevant to neurological rehabilitation.

Power Heroes Ambassador Family-Charles, Debra and seven year old Payton White were introduced as Dr. Aisen spoke further about the highly advanced robotics training that Payton will begin receiving in January. Charles White thanked CPIRF for their ongoing work to help families with CP and explained the promising future his son will have due to CPIRF.

Live and silent auctions raised twenty thousand dollars and included exquisite paintings, lunch with the cast and crew of NCIS, a walk-on to the set of ER, jewelry, handbags and more. The most memorable item that was auctioned off during the evening was won by Honorary Chair Taryn Rose, whose bid of three-thousand, two hundred fifty dollars won a four-day pirate cruise aboard Halley’s Comet, a ship owned and captained by John Amos.

Other Honorary Chairs of the evening included Charles Floyd Johnson, Anne Johnson and Shelley E. Reid. Proceeds from the Power Heroes Gala went to CPIRF’s new research initiative to prevent and treat Cerebral Palsy in the African American population.

21st CENTURY NEURO-REHABILITATIVE TECHNOLOGIES WILL BE INTRODUCED AT THE “TRANSFORMATIONAL TECHNOLOGIES” SEMINAR IN CHICAGO

Revolutionary technologies in the fields of Robotic Therapy and Virtual Reality Neuropathology
to be presented at two-day conference

CHICAGO, IL (July 29, 2008) The Cerebral Palsy International Research Foundation has teamed up with the Rehabilitation Institute of Chicago to present the Transformational Technologies seminar from August 14-15, that will highlight robotic therapies and their use in improving motor skills for people with cerebral palsy. This new approach will bring hope that CP patients will be able to live longer and more independently.

Celebral Palsy is defined as a condition caused by brain damage in a child before the age of two years old that results in a lack of muscle control, especially in the limbs. About 800,000 people in America have some form of cerebral palsy. Each year 10,000 infants are diagnosed with cerebral palsy. About 2-3 children per 1,000, have cerebral palsy.

The conference will feature workshops and demonstrations of robotic therapy, play therapy, virtual therapy and rehabilitation, as well as question and answer sessions from the world’s preeminent authorities on both Cerebral Palsy Rehabilitation and Robotic/Virtual Reality Therapy technologies. The purpose is to promote discussions and new hypotheses from accomplished researchers so that new discoveries can continue to be made.

Robotic Therapy, already in use for stroke rehabilitation, utilizes the functions of robots to perform a task that requires more fine movement than a human can do. Robots can be used to guide a paralyzed limb through movements in a very exact way that combines the person’s intended movement with the actual movement they are initiating, thus enabling them to complete the intended movement. Robots can help a paralyzed or disabled person practice a task that involves arm or leg movement, such as playing a musical instrument or walking.

“Imagine possibilities in the highly plastic brain of the baby or child with cerebral palsy,” says Dr. Mindy Aisen, Co-Chair of the seminar and one of the foremost authorities of Cerebral Palsy research. She adds, “It IS possible for children to grow up with more strength, coordination, and less spasticity and pain and this event will focus on how to remedy some of the immobilizing effects of cerebral palsy.”