"The shocking lack of cerebral palsy research: Moms speak out" (blog)

[IdaBriggs]

We got a shout-out from one of the moms! But this link also talks about a bigger issue...

http://www.lovethatmax.com/2013/10/cerebral-palsy-research.html

Today is World Cerebral Palsy Day 2013 , a great thing for the attention it will bring CP and the ideas people will share for bettering the lives of people with CP. There's just one other thing a day like this needs: a call for more research dedicated to cerebral palsy. Because there is an alarming lack of it.

Cerebral palsy is not a priority for research funding

Cerebral palsy is the most common motor disability in children; a study in this month's Developmental Medicine & Child Neurology journal says it affects about 3 of every 1000 kids, a rate unchanged from the 2008 stats of the Centers for Disease Control and Prevention (CDC). CP is an umbrella term for a group of movement disorders. Some people might just have trouble using one hand, others might have tightness ("spasticity&quot in all four limbs.

There is no known cure for CP. Not much is known about the cause although one recent investigation by the National Institute of Neurological Disorders and Stroke found the top risk factors that contribute to cerebral palsy are birth defects and/or poor fetal growth, which beat out loss of oxygen and infection.

(snip)

"Last year, my daughter participated in the Preemie Growth Project, which was about replenishing minerals necessary for a healthy brain. The research looked promising based on the results of the children participating in the study. The woman behind the project tried relentlessly to get the attention of medical professionals and researchers, yet even with the results, nobody seemed willing to listen. Eventually we stopped participating for a couple of reasons: the cost, and the lack of support from professionals. And the project was working; slowly we saw our daughter with cerebral palsy improve, as if her body was "waking up." Just a few days ago my daughter was described as a "superstar" by her team at Mayo clinic. She is determined to walk, to move, to live! But what a difference it would make if someone was willing to fund research, to give her a try outside of putting her under the knife to lengthen one more muscle."—Ellen Stumbo of These Broken Vases; mom to Nina, 7, who has cerebral palsy

(more at link)