University of Michigan’s New Cerebral Palsy Research Registry

A brand new cerebral palsy research registry is being established at the University of Michigan in Ann Arbor.  Cerebral palsy (CP) is a group of disorders that causes a child to struggle with movement.  It affects balance, posture, and coordination, and it is caused by an injury to the developing brain.  This means that a child can get cerebral palsy until she is about 3 years of age, although CP sometimes isn’t diagnosed until a child is 4 or 5 years old.

Cerebral palsy is the most common cause of disability in children.  Yet, research in this area is sadly lacking.  There is no cure for cerebral palsy, although there are researchers in Virginia that have recently begun studying a therapy that has helped stroke victims regain brain function.  The therapy appears to be promising for children with cerebral palsy.  There have been several major breakthroughs in cerebral palsy research over the last few years, but funding for this area is lower than many other areas.  In fact, there are no federal funds devoted specifically to cerebral palsy research, and this includes treatments for and prevention of CP.  The National Institutes of Health (NIH) dedicated about 4 times more funding for research and observation of multiple sclerosis, Parkinson’s disease, and muscular dystrophy, even though these conditions affect half as many people as those with cerebral palsy.  Population studies about cerebral palsy do not even receive specific funding; these studies are grouped together with studies on autism.

The Cerebral Palsy Research Consortium of Michigan (CPRCoM), which is a collaboration of researchers and medical professionals in Ann Arbor, is working to create a research registry for all people who have been diagnosed with cerebral palsy.  The registry will keep a list of people with CP who want to be contacted when opportunities for research participation are available.  In addition, people on the registry can receive information about recent research findings and other important information pertaining to cerebral palsy.  The goal of the CPRCoM is to promote and hasten cerebral palsy research, especially research relating to CP treatment, quality of life and CP prevention.

Ann Arbor has great resources for people who have cerebral palsy, including the Cerebral Palsy Comprehensive Care Center and the Ann Arbor Center for Independent Living.  The University of Michigan, Wayne State University and Detroit Medical Center are known for their continued efforts in the area of cerebral palsy research, but there must be more funding at the national level.  Listed below are some ways in which parents can help increase cerebral palsy funding.

WHAT CAN PARENTS DO TO HELP INCREASE FUNDING FOR CEREBRAL PALSY RESEARCH?

·    Be involved in nonprofit organizations that advocate for cerebral palsy research.  These include the following:

o   Cerebral Palsy International Research Foundation

o   Reaching for the Stars

o   Let’s Cure CP

·    Register your child with the Cerebral Palsy Research Registry, which is an effort by institutions throughout the country to improve the lives of people who have cerebral palsy by promoting research.  Families on the registry will be notified of new trials and studies, although it is up to each family to register their child for a study or studies.  There are many different types of studies listed on the registry.  Sometimes participating in a study might have a direct benefit for the child.  Other times, participating in a study may have no direct benefit but will help with future interventions, treatments, therapies or public policy.  Research listed on the registry includes studies that test new drug therapies, treatment programs and interventions.

·    Visit ClinicalTrials.gov. and join a study.  If you type “cerebral palsy” into the search box, you will see a list of government funded studies.  Examples of studies that are currently enrolling children include studies involving CP and stem cell therapy, CP and sleep apnea, CP and upper limb assessment, and CP and hypertonia (muscle stiffness).

·    Write letters to your senators and representatives and urge them to fight for more federal funding of cerebral palsy research at the Centers for Disease Control and Prevention (CDC) and NIH.

·    Join the National Institute of Neurological Disorders and Stroke Patient Advisory Core.  One goal of the group is to pair patients with researchers, and the group is a big promoter of clinical research.

**  It is important to note that United Cerebral Palsy National is focused mainly on the needs and civil rights of the disabled in general, and not just cerebral palsy.  The organization has no formal commitment to funding cerebral palsy medical research, and many people are petitioning the organization to drop the phrase “cerebral palsy” from its name.

HELP FOR CHILDREN WHO HAVE CEREBRAL PALSY

The attorneys at Reiter & Walsh ABC Law Centers have been helping children in Ann Arbor and throughout the nation with cerebral palsy for over two decades.  Jesse Reiter, the firm’s co-founder, has been focusing on birth injury cases his entire 25+ year career, and most of Jesse’s cases involve helping children who have cerebral palsy.  When Jesse takes a case, he spends a lot of time getting to know the child and family he is helping so that he can fully understand the child’s needs.  Jesse has won many awards for his advocacy of children, and he is currently recognized as being one of the best medical malpractice lawyers in America by U.S. News and World Report 2014, as well as one of the 10 Best Attorneys in Michigan by Super Lawyers magazine. Reiter & Walsh ABC Law Centers is also recognized as being one of the best law firms in the country by U.S. News and World Report 2014.

Cerebral palsy is a difficult area of law to pursue due to the complex nature of the disorder and the medical records that support it. The nationally recognized attorneys at Reiter & Walsh ABC Law Centers have decades of experience with cerebral palsy cases. To find out if you have a case, contact our firm to speak with an experienced attorney.  We handle cases in Michigan, Ohio, Texas, Washington, D.C. and throughout the nation.  We have numerous multi-million dollar verdicts and settlements that attest to our success, and no fees are ever paid to our firm until we win your case.  Email or call us at 888-419-2229.

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