Legal and Medical Resources to Empower Cerebral Palsy Families
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By Dr. Jim Blackman, Medical Director, Cerebral Palsy International Research Foundation Stem cell therapy is promising yet there is misunderstanding regarding the current state of its readiness for treatment of cerebral palsy. There are only two institutions in the United States conducting carefully designed research trials of stem cells in cerebral palsy but there are [...]
By Teresa Kelly CPFN Relationships Director Sunday, March 25, was National Cerebral Palsy Awareness Day. As promised, we unveiled the winners of the Cerebral Palsy Family Network’s Facebook “Like” campaign: The Cerebral Palsy International Research Foundation and the Easter Seals, Greater Washington–Baltimore Region. These two top-notch organizations – selected by you, our families – received [...]
By John Hartford Among the more promising lines of research in repairing cell damage in children with cerebral palsy is stem cell therapy. A cursory on-line search of the topic reveals multiple clinics promising “remarkable cures” and astonishing patient stories. A closer look reveals that medical researchers with the highest credentials are cautioning parents [...]
By Howard Janet Washington University Medical School researchers report that an enzyme in the body that protects against brain cell death may help prevent cerebral palsy that results from oxygen deprivation during labor and delivery. As exciting as this is, I can’t help wonder – again—at all the effort by medicine to address cerebral [...]
By: John Hartford Although osteoporosis is often associated with aging, it is a common complication of cerebral palsy beginning in childhood. Osteoporosis is a disorder characterized by lack of bone density or bone mass. Children with these “thin bones” can sustain bone fractures from very little trauma, seriously impacting all areas of their lives. Although [...]
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In October, I wrote several articles titled “Diary of a Crisis” about a medical emergency we experienced with our daughter, Danielle. Danielle has suffered from severe spastic quadriplegia cerebral palsy since birth. The past 18 months have been a constant struggle with medical professionals to get answers about our daughter's deteriorating health.
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Birthing classes and many books about pregnancy help parents-to-be prepare for the birth experience and some of their choices, especially when it comes to managing pain. However, few deal with potential complications, preferring to leave that scary ”what if” in the hands of doctors. However, my experience as a practicing obstetrician for more than 20 years is that it’s vitally important for parents to know what standards of care are and how to advocate for themselves and their child if these standards are not being met.
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