CPIRF to Participate:

Shared Learning:
Global Perspective

The AACPDM’s 64th Annual Meeting is designed to provide targeted opportunities for dissemination of information in the basic sciences, prevention, diagnosis, treatment, and technical advances as applied to persons with cerebral palsy and developmental disorders. The program provides a forum for discussion of scientific developments and clinical advances in the care of people with these problems. By presenting forums which foster interdisciplinary communication and interchange among all allied health care professionals concerned with individuals with cerebral palsy and neurodevelopmental disorders, this program’s purpose is to ensure that the qualified personnel have the skills and knowledge derived from practices that have been determined through research and experience to be successful in serving children
with disabilities. The purpose is also to encourage teambuilding within organizations and institutions, encourage multicenter studies, develop information for parents, and find a consensus on the optimal care of various conditions.

The AACPDM’s annual meeting has evolved over time in which it began as a limited event by only inviting physicians who were diplomats of specialty boards into now inviting all health care professionals concerned with the care of patients with cerebral palsy and other childhood onset disabilities, including: Developmental and other Pediatricians, Neurologists, Psychologists, Physiatrists, Orthopedic and Neuro-Surgeons, Physical and Occupational Therapists, Speech and Language Therapists, Orthotists, Rehab Engineers, Kinesthiologists, Nurses, Special Education Teachers, Educators and Administrators, Researchers, and Dieticians.

CPIRF to sponsor Research Panel with a $5,000 Educational Grant, in conjunction with AACPDM

As part of our co-sponsorship of the AACPDM conference, CPIRF will be joining UCP and AACPDM in hosting a CP research panel discussion at the September 22nd conference welcoming session taking place at the Newseum in Washington, DC.

CPIRF Best Scientific Poster Award

Each year, Cerebral Palsy International Research Foundation provides an award for the best scientific poster presentation given at the Annual Meeting. The AACPDM Awards Committee reviews all of the scientific posters and grades each poster per specified criteria noted below:
- Methodology/Hypothesis
- Data Analysis
- Discovery / Interpretation
- Clarity of Writing / Presentation
- Relevance / Significance
- Originality
Each criteria is given a rating of Outstanding, Excellent, Good, Fair, or Poor. Then all of the scores are totaled and averaged. The Award Recipient is selected as highest rated average poster from all committee member ratings.

CEO, Glenn R. Tringali, to Present Goldenson Award to Dr. Terry Sanger

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. CEO Glenn R. Tringali will be presenting the award to Dr. Sanger during the AACPDM Conference at a ceremony on Friday, September 3, 2010.

See full story of “2010 Goldenson Awards” in “CP In The News”, Featured Stories.

ADD funds projects of national significance (PNS) designed to foster systems change in meeting the needs of people with developmental disabilities and their families. ADD is asking people to complete a short on-line survey about the types of programs and projects that would be most helpful to people and their families. The survey can be completed on line until September 1, 2010

Link to the survey.

A Conference for Adults with Cerebral Palsy

The CP conferences bring together adults with CP as well as members of the medical profession, social workers and educators who focus on the issues confronting adults with CP. For many adults with CP, as well parents and caregivers, the conferences are the only source of information about living with CP.

The conference takes place from June 25th to June 28th in San Jose.

Read the full brochure here.

Mindy L. Aisen, MD – Medical Director of CPIRF and Rancho Los Amigos Rehabilitation Hospita

CPIRF and Rancho Los Amigos Rehabilitation Rancho Los Amigos National Rehabilitation Center will hold a focused retreat/workshop examining the role of commercially available and emerging technologies for improving motor performance, psycho-social function, cognitive/behavioral function, environmental control and means for extending treatment into the community setting. The neurological conditions to be discussed will be Cerebral Palsy, CP/Autism, Autism spectrum disorders, Stroke, Multiple Sclerosis, Traumatic Brain Injury, PTSD/motor impairments, epilepsy/electrophysiology.

The technologies to be discussed include: robotics, virtual reality, task specific therapy, robotic enhanced socialization, bidirectional broadband communication and monitoring in the community (for health, wellness, safety, continuing rehabilitation), and emerging techniques for using EEG/computer interfaces, and brain computer interfaces.

The  goal is to have industry, academic engineering and clinical researchers present methods and data; then develop cross disciplinary collaborative ideas and dialog to set the stage for new clinical trial development.
The workshop is scheduled for September 2-4, 2010 at the Rancho Los Amigos National Rehabilitation Center in Downey, CA.  The proceedings of the meeting will be published as a supplement to the Journal of Neurorehabilitation and Neural Repair.

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

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.