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10/02/2013 04:45 pm ET | Updated Dec 02, 2013

World Cerebral Palsy Day 2013: Moms Speak Out About Lack Of Research

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") 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.

CP affects 800,000 people in the U.S., and some 3,000,000 families. And yet, there is no dedicated federal funding for researching cerebral palsy -- including treatments and ways to prevent it. As stats on Reaching for the Stars show, the National Institutes of Health devoted up to four times more funding for research and surveillance of muscular dystrophy, multiple sclerosis and Parkinson's, conditions that affect half as many people as those with CP. For every funding dollar spent on children, seven were spent on the elderly.

Even population studies about cerebral palsy are tacked onto ones about autism, as is the case with the new CDC study that also tracked autism in children with CP (it co-occurs at a rate of 6.9 percent). This isn't a gripe about all the funding for autism research (about 1 in every 88 kids is on the autism spectrum, per the CDC). This is a wake-up call for those of us who have kids with cerebral palsy.

Max's neurologist has had wonderful suggestions over the years, including giving him an Omega-3 supplement to boost brain development (we use Coromega). Four years ago, Max got a stem cell infusion. We're not exactly sure if and how it has helped, but we were thrilled we got the opportunity to try it because there are so few treatments available for kids with cerebral palsy.

What parents have to say

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Moms Speak Out About Lack Of Cerebral Palsy Research

So, what can parents of kids with cerebral palsy do?

• When family or friends ask where they can make donations, or you want to make one, choose nonprofits that advocate for funding of cerebral palsy research including Cerebral Palsy International Research Foundation, Reaching for the Stars and Let's Cure CP. Important FYI: United Cerebral Palsy National is now focused on the needs and civil rights of the disability community at large, not just CP -- and has no formal commitment to funding medical research for it. (Michele Shusterman started a petition months ago to get UCP to remove the "CP" from its name, as some local affiliates have already done.)

• Register your child for the Cerebral Palsy Research Registry, a multi-institutional effort whose mission is to improve understanding of cerebral palsy. The secure database can be used to connect interested families with researchers studying CP, and as a data tool.

• Consider joining a clinical trial; search cerebral palsy at ClinicalTrials.gov.

• Write your senators and representatives (find their contact info here) and urge them to advocate for more federal funding of cerebral palsy research at the National Institutes of Health and the Centers for Disease Control and Prevention.

• Consider joining the National Institute of Neurological Disorders and Stroke Patient Advisory Core. The group is the process of developing ideas and building a database. Among other goals, it hopes to pair patients and researchers, and also advocate for the importance of clinical research. Contact: jamie.roberts@nih.gov

CP Daily Living's homepage has a regularly updated list of educational conferences, telecasts and fundraising events.

This post originally appeared on Love That Max.

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