United Cerebral Palsy Research and Educational Foundation

Make a donation to UCPREF
Your generous donation is urgently needed to help UCPREF in its goal to prevent, treat and cure cerebral palsy and related developmental disorders.

Please remember us in the Combined Federal Campaign
2008 CFC # - 10919

Highlights

We are changing our name! Stay tuned...

Also...we want to highlight some upcoming events...

Transformational Technologies for CP in Chicago - August 2008
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CP in the Adult Workshop in Atlanta - September 2008
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Injury to Preterm Brain and Cerebral Palsy Symposium in Satna Clara, CA - November 2008
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Abbey Curran is currently the reining Miss Iowa USA 2008. She was crowned in November 2007 and become the first state winner in the history of the Miss USA Pageant who has dealt with special challenge her entire life. Abbey grew up a hog farmer's daughter and was born with Cerebral Palsy and has dedicated her life to proving that no challenge or limitation is great enough to stop her from achieving her dreams.

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Television and Screen Actress Ms. Deborah Raffin is a “Champion of UCPREF”

For the past ten years, Ms. Raffin has been portraying Aunt Julie on the acclaimed series 7^th HEAVEN. Ms. Raffin first became familiar with CP when she starred in a Golden Globe – winning movie called "Touched by Love".

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In the News

January 7, 2008
Update on the Middle East Collaboration Study

UCPREF staff will be visiting the research sites in Jordan, Israel and the Palestinian territories later this month. UCPREF Board Member Teresa Fausti will be bringing along a film crew to document this extraordinary project. Look for film clips on our website!
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Administration of Magnesium Sulfate May Reduce the Occurrence of Cerebral Palsy in Premature Infants by Half

Dr John Thorp, an OB-GYN the University of North Carolina (UNC) at Chapel Hill conducted a large clinical trial at 20 different sites to examine the effect of magnesium sulfate on the rate of stillbirth or infant death, and the rate of moderate or severe cerebral palsy at or after the age of 2 years
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Miracle in the Middle East

We hope you find this story by CNN interesting and inspiring. This is clinical research that UCPREF is supporting and it is having a meaningful impact on children with cerebral palsy today, while advancing science to lead to better care tomorrow. It is also helping to foster peaceful coexistence and collaborative scientific discovery between Israel and the Palestinian Territories.

Click here to see the CNN broadcast, the piece on CP research is on the later half of the video.

Did you know?

There are more boys born with Cerebral Palsy than girls (for every 100 girls there are 135 boys)
About 1/2 of children with CP are born prematurely.
More than 1/2 of children with CP have bilateral spastic paraparesis (leg weakness)
About 1/3 of children with CP have hemiplegia (one side of the body paralyzed, as typically seen in adult stroke)
Stroke in a baby or child less than the age of 3 results in CP.
1 in 9 people with CP have features of Autism.
1 in 4 people with CP have epileptic seizures.
6 out of 10 people with CP have normal or superior intelligence.
1 in 11 children with CP are legally blind.
About 3 of 10 children with CP have severe learning disabilities.
1 in 50 children with CP are deaf.
1 in 20 children with CP have tremor and ataxia.
1 in 3 children with CP cannot walk.
1 in 4 children with CP cannot feed or dress themselves.
The incidence and prevalence of Cerebral Palsy is rising world wide, there are new treatments that must be tested to improve function and decrease the disability caused by CP. These include medications, regenerative techniques, physical and cognitive therapies, robotics, functional neuromuscular stimulation, bio-feedback and more.

UCPREF Spring Gala Dinner

UCPREF’s First Annual Gala held at the Beverly Hills Hotel in Beverly Hills, CA on March 30th was a smashing success in raising awareness of the need for more research into the prevention and treatment of cerebral palsy and other neurological disorders. Please stay tuned for pictures and video highlights.
View the Invitation: Page one | Page two

June 2008 Fact Sheet
Can early stimulation programs minimize disability in children at risk for neurodevelopmental disorders?

Neuroprotection, once just used to characterize compounds that prevent cell death, now encompasses organizational, therapeutic and environment-modifying interventions that promote normal development and prevent disability in children at risk for developmental disorders. At risk children include those of low socioeconomic status, prematurity and/or low birth weight. Early stimulation programs are considered to be an environment-modifying type of neuroprotective interventions.
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Help Support the UCPREF/AACPDM jointly sponsored Workshop:

“Adults with Cerebral Palsy: A Workshop to Define the Challenges of Treating and Preventing the Secondary Complications in this Rapidly Growing Population” to be held prior to the annual AACPDM meeting in Atlanta, GA September 17-19, 2008.

Most children with CP are now surviving into adulthood and they face unique physical and medical problems related to their underlying condition. Indeed, aging adults with CP experience an early decline in function and mobility which is multi-factorial and poorly documented.
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The Foundation is sponsoring a monograph concerning Quality of Life for the Young Adult with Neurological Disability.

This monograph will be available soon and was inspired by the recent jointly supported Castang-UCP Research and Educational Foundation Conference held in London 2007.
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Alert

UCP Research and Educational Foundation Comments: Regarding recent FDA Public Notification concerning adverse events reported in children with CP who have received treatment with Botulinum Toxin injections

Concerns about the safety of Botox injections to treat spasticity in individuals with CP have recently been raised. It has not been established whether these adverse events are causally related to Botox treatment. Serious adverse events have been reported in 4 children with cerebral palsy. The FDA is currently reviewing safety data from clinical studies submitted by the drug's manufacturers, as well as post-marketing adverse event reports and medical literature. The FDA is not advising health care professionals to discontinue prescribing these products.

After completing a review of the data, the FDA will communicate to the public its conclusions, resulting recommendations and any regulatory actions. In the interim, the FDA is not advising health care professionals to discontinue prescribing these products. UCPREF is closely monitoring this situation and will alert the CP community of any new developments.
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United Cerebral Palsy Research and Educational Foundation has relocated:

UCP Research and
Educational Foundation
1025 Connecticut Avenue
Suite 701
Washington, DC 20036

Phone numbers:

Mindy Aisen, MD:
    (202) 496-5015
Nancy Maher, PhD:
    (202) 496-5060
Gloria McDowell-Lewis:
    (202) 496-5061

Read our 2007 Program Overview Click here to view (PDF)

Research Blogs

Ben Kaplan's Blog

Ben and Oliver are 27 years old. Ben has CP and Oliver does not. Ben graduated from Menlo College with B.A. in Mass Communications, Magna Cum Laude, and has professional experience in radio and public relations and has volunteered on multiple political campaigns. Oliver is a Ph.D student at Stanford University in political science. Ben has left hemiplegia CP resulting from a neonatal stroke (intraventricular hemorrhage). The incidence of CP amongst twins is an astonishing 12%; 50 times more likely to be affected by CP than single birth pregnancies.

Arnold Werner Fund for Research on Adults with Cerebral Palsy

About the Fund and How to Donate
The Arnold Werner Fund has been set up to provide funding for research on adults with Cerebral Palsy. To Donate, please click the Donate link on our site and note 'Arnold Werner Fund' when you make your donation.

Learn more about Arnold Werner

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