Ms. Jacqueline Carmosino has been hired as Manager of Administration for CPIRF, having joined CPIRF on June 1, 2010. Jackie has extensive experience in both the non profit and private sectors, having served in executive administrative capacities for the National Alliance for Autism Research (NAAR) and Autism Speaks, Inc. for the past 8 years after having spent over 25 years working in Summit Bank executive offices.

Jackie is based with CEO Glenn R. Tringali in our new office at 186 Princeton Hightstown Road, Building 4, 2nd Floor; Princeton Junction, NJ 08550 which opened on June 1, 2010. The Princeton Junction location will be the CPIRF headquarters and eventually the sole operating office once we complete the transitional process of closing our Washington, DC office on or before September, 2010. (NOTE: Donor contributions and billing inquiries will continue to be processed through our Washington, DC office until such time.)

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.

“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. Stephen Fausti receives Jerger Career Award for Auditory Research

The American Academy of Audiology honored Dr. Stephen Fausti with the Jerger Career Award for his distinguished career in audiology research during their conference in San Diego on April 15. Dr. Fausti is the Director of the Portland VA Medical Center’s (VAMC) National Center for Auditory Rehabilitative Research (NCRAR) and a member of the Cerebral Palsy International Research Foundation Scientific Advisory Council. Please CLICK HERE to read more.

The Today Show featured a segment on cerebral palsy and robotic therapy. The segment showed footage from CPIRF’s project at Blythedale Children’s Hospital in Valhalla, NY featuring upper extremity robotic therapy and from the Rehabilitation Institute of Chicago where we held a joint workshop on ‘Transformational Technologies’, to get the research community interested in using technologies shown to be effective in stroke rehabilitation for use in cerebral palsy therapy. Additionally, Meredith Vieira interviewed Dr. Nancy Synderman about the increasing prevalence of CP, the reasons why, and new therapies on the horizon.

Please find below a link to the Today Show website that contains the CP segment aired this morning.

Click Here to watch the Today Show Segment!

Stay tuned for our posting of the video segment!

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.

The Developmental Medicine and Child Neurology  Supplement on “Adults with CP workshop” is now available. Please go to this link to download entire content:

The Developmental Medicine and Child Neurology  Supplement on “Adults with CP workshop”

Dr. Mindy Aisen gave a plenary talk at the 63rd AACPDM Annual Meeting on September 26th in Scottsdale, Arizona. Her talk was entitled ‘ Updating Research Priorities for Cerebral Palsy’.

Download her Power Point Presentation here.
(Problems? Try right-clicking and “Save Target As…”)

Gary Lynn, CPRIF’s Ambassador at Large, was chosen by the City of Houston to receive the 2009 Mayor’s Disability Advocate of the Year Award. The award committee noted his ‘efforts to remove barriers for people with disabilities and to be a voice for those unable to effectively represent themselves’. They went on to state ‘your work on behalf of the disabled community demonstrates your commitment to ideals that are key to equal participation and full inclusion of people with disabilities in Houston’.  Gary will be honored by Houston’s Mayor and Council Member Wanda Adams on Tuesday October 13, 2009 at 1:30 p.m. at the Council Chambers, City Hall, 901 Bagby.

Gary Lynn from Houston, TX  regularly holds events to raise money for cerebral palsy research. He has donated almost $12,000 to CPIRF because he understands the importance of research in preventing CP and improving the quality of life for both children and adults who have this condition. Gary, who has spastic, quadriplegic cerebral palsy, started his own foundation, the Gary J. Lynn Foundation because of his desire to help others with cerebral palsy who may not have been as blessed as Gary to help achieve their hopes and dreams and to enhance their lives.  Please visit Gary’s website www.thegaryjlynnfoundation.org to learn more about his Foundation and his many great fund-raising activities.

Three new research awards were made in 2009 by the CPIRF Board. The first award was made to Dr. Ahamed Hossain of the Hugo W. Moser Research Institute at Kennedy Krieger, Inc.

He plans to study neuronal pentraxin 1 (NP1), a novel neuronal protein and a member of a newly recognized subfamily of “long pentraxins”. His goal is to determine the role and function of this protein in the molecular cascade of neuronal death in neonatal brain injury triggered by a hypoxia-ischemic (HI) event, an important risk factor for the development of cerebral palsy. His previous work has shown that NP1 is induced in neonatal HI and that anti-sense oligonucleotides directed at NP1 mRNA prevent neuronal loss. The long term goal is to develop a molecular target (NP1) that will prevent hypoxic-ischemic brain injury in infants.

 

The second award was made to Dr. Greg Wilson of the Riley Hospital for Children in Indianapolis, IN. He will be studying the effectiveness of robots developed by Dr. Igo Krebs of MIT for both the shoulder and wrist of children with moderate to severe hemiplegic cerebral palsy in improving upper extremity function. In addition he and his team will determine if the random presentation of targets in the accompanying video portion of the robotic therapy leads to better transfer and retention of motor skills than an ordered presentation of targets in children with cerebral palsy. Motor learning literature suggests that random presentation leads to increased motor learning but this has not yet been studied in children with CP. This project will be conducted in the newly established robotics center at Riley which was made possible by the efforts of CPIRF Board Member Margaret Goldsmith and the Executive Director of UCP Indy, Donna Roberts.

 

The third award was made to Dr. Simona Bar-Haim of the Assaf Harofeh Medical Center in Zerifin, Israel. Dr. Bar-Haim along with her Moroccan, Jordanian and Palestinian colleagues will be studying the effectiveness of shoes that employ the theory of “chaotic perturbation” in improving the walking ability of adolescents with spastic diplegic/tetraplegic cerebral palsy.