Wednesday, October 2, 2013

The shocking lack of cerebral palsy research: Moms speak out


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 


"My daughter has cerebral palsy. Despite the happiness she exudes, Maya openly shares her frustrations about her daily challenges with us. She wants to use the bathroom by herself, brush her own hair, dress herself, drink from an open cup, sit on the floor without falling. Recently she shared with us that someday she hopes to walk even if just for part of the day. She is eager to help herself make these advances. Unfortunately, the current therapy protocols will not help her meet many of her goals. None of the current available treatments for CP are estimated to provide more than an average 4 to 10 percent gain for the individual, per Iona Novak, Head of Research at CP Alliance Australia. In Maya’s lifetime, parents of kids with CP as well as adults with CP should have the opportunity to choose therapies or interventions that will provide meaningful change in mobility and quality of life."—Michele Shusterman, CP Daily Living; mom to Maya, 6, who has cerebral palsy

“These days, a diagnosis of cerebral palsy is pretty much like having the medical community shrug their shoulders. They know what it is, and can alleviate some of the symptoms, but there's definitely an attitude of 'There's nothing we can do.' My son is smart and sassy, but his body just won't comply. If he makes even a small gain in therapy, he uses it to the best of his advantage. Imagine what he could do if if we were able to actually improve his condition.”—Katy Monnot of Bird on the Street; mom to Charlie, 6, who has cerebral palsy

"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

"The current surge in autism research is heartening; I'm grateful so many people want to help autistic people like my son Leo. But we have to remember that all kids with disabilities deserve that same attention, deserve that same research funding, deserve to live the best lives possible."—Shannon Des Roches Rosa of Thinking Person's Guide to Autism and Squidaliciousmom to Leo, 12, who has autism

"It's disappointing to see so little interest in researching the causes and possible treatments for cerebral palsy. Most of the available treatments focus on the symptoms, but orthopedic procedures can't fix circuits that are misfiring in the brain. I'm a former electric power engineer, and I know that propping up a pole won't get the power back on if the wire is lying on the ground! Discovering what makes the brain work and how to help it repair itself has implications way beyond the cerebral palsy community, as well."—Andi Sligh of Bringing the Sunshine; mom to Sarah Kate, 10, who has cerebral palsy


"With an adult who has a stroke, say, it's easy to imagine the function they had and the function they could have again with proper treatment and care. But with a child, it's much easier to brush it off as: 'They were born that way, so that's the way they'll always be.' Parents of kids with CP have very little time and money to address this issue on a national scale. Instead, many of us are paying thousands, if not tens of thousands, every year to do what medical science refuses to: find treatments that work."—Shasta Kearns Moore of Outrageous Fortune; mom to Malachi, 3, who has cerebral palsy

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 FoundationReaching 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 ad 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.

See also:

30 things people don't get about kids and adults with cerebral palsy

Why you shouldn't pity my child with cerebral palsy

17 comments:

  1. You're so right there isn't much research being done on Cerebral Palsy I hadn't noticed before.

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  2. Ugh. So much autism research. I really want someone to focus on cerebral palsy because that affects people physically.

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    1. It is truly AMAZING that there is so much autism research. One does not outweigh the other. This is not a competition! There can be lots and lots of research out there for all kinds of disabilities.

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  3. I had no idea CP wasn't being researched much. I'd heard a few news stories about cooling babies and whatnot and, I guess, I just assumed. . . How frustrating.

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  4. Just wait until they become adults - there is NOTHING available for them, medically or otherwise!

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  5. Thank you so much for this post! I have a child on the autism spectrum and another child with CP, and I too have observed that the funding disparities are significant and inexplicable.

    I also very much appreciate the resources you've included.

    I have friends who have traveled to other countries for CP treatment and witnessed for myself how effective some of these treatments can be! The only thing holding us back here in the United States seems to be funding. We're just on the brink of medical history and life-changing advances...wouldn't it be nice to see our own children benefit!

    I'm grateful for organizations like Let's Cure CP (www.letscurecp.org) - and eye-opening articles like this one - that bring to light the exciting potential and very real treatment advances we could reap with some focus and funding.

    So thank you, and happy World CP Day to all! :)

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  6. Thank you Ellen for bringing awareness to this very important issue. We need to advocate for our community! If we do not ask questions, raise awareness about the lack of funding, and mobilize as a community, things will not change.

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  7. Totally not surprised by your findings...I am a young entrepreneur whose nephew suffers from Cerebral Palsy. I have designed an exoskeleton that will help children walk, but at a price that families and clinics can afford. I would love to talk to you more on this topic.
    I also encourage all the readers here to check out AlitusMedical.com. I am looking for support from the CP community.
    Please email me at manmeet@alitusmedical.com

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  8. Ellen, thank you for sharing this important information, It's so critical that more of us are aware of these funding disparities and the lack of needed research for Cerebral Palsy - the most common motor disability in children impacting 17,000,000 people worldwide. Thank you also for sharing the advocacy work that we are doing at "Reaching for the Stars. A Foundation of Hope for Children with Cerebral Palsy." We would love more families to get involved, become informed and speak up. If we speak together with one voice, we can make all the difference! Cynthia Frisina, Executive Director, www.reachingforthestars.org

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  9. Ellen, thank you for sharing this important information, It's so critical that more of us are aware of these funding disparities and the lack of needed research for Cerebral Palsy - the most common motor disability in children impacting 17,000,000 people worldwide. Thank you also for sharing the advocacy work that we are doing at "Reaching for the Stars. A Foundation of Hope for Children with Cerebral Palsy." We would love more families to get involved, become informed and speak up. If we speak together with one voice, we can make all the difference! Cynthia Frisina, Executive Director, www.reachingforthestars.org

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  10. Thank you so much for this article! As a mother of a daughter with CP (she had a stroke the week before she was born), I was discouraged to find out about the very limited funding and research for CP. The good news is that we live in a time where it IS POSSIBLE to find ways to prevent, treat, and cure CP. The new neuroplasticity and brain research is very encouraging. Thank you to Reaching for the Stars - www.reachingforthestars.org - for the advocacy work that they have done on behalf of children with CP!

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  11. I live in Orlando, FL and there is an awesome facility here called Conductive Education Center of Orlando (http://www.cecfl.org/) which works with kids with all types of motor disabilities. The methods that they use are brought from Hungary and the results are amazing. My son has low muscle tone and they worked with him for just one summer. Soon after the summer ended he began to walk. I would encourage all parents with kids with CP or any other motor disability to check out the website. Although you may not live in Florida they may be able to give you information regarding therapy available in your area.

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  12. Thank you so much for bringing awareness to this issue, Ellen!

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  13. Thank you so much for sharing this very important information! Let's Cure CP is working diligently on funding Cerebral Palsy research and to raise awareness of other studies available for both Children and Adults with CP.

    We are holding regular webinars and our next one will be held Wednesday October 9th 2013 at Noon EST.

    Topic: Cerebral Palsy Genetic Research Collaborative Study for Adults & Children with Cerebral Palsy.

    Subscribe to our newsletter https://tinyletter.com/curecp to be invited to our upcoming webinar series! Please "Share" and make people aware. www.facebook.com/letscurecp

    Hosted by CureCP.org and Presented By: Michael Kruer, MD
    Pediatric Neurologist and Principal Investigator, CP Genetic Research Collaboration

    Jeff Kitchens
    National Development Director
    Let's Cure CP
    CureCP.org

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  14. Until people make a big enough stink, nothing will change. Look at how AIDS research got done - enough pissed people made a big enough stink.
    As a side tangent, biofeedback was looked at and found to be somewhat helpful for cp
    as far back as the 1970s. Its a low cost non invasive therapy but it never got serious consideration from the med community. Yet, they are all about braces, surgery and drugs.
    When I asked the PT why no one looks at biofeedback she just said 'well it won't cure cp.' I said 'well, surgery doesn't cure it either.' No answer. There are a few other similar things to biofeedback and who knows what else is already out there languishing in some lab....but until parents and also adults with cp make enough noise, not much will change.

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  15. I think any "project" that demands money up front is probably a sham or a scam. A research project shouldn't require that the participants pay to partake. They get underwritten by a university or a government grant if there's any "there" there. Sometimes we get so eager for a positive result that we want to believe that some magic elixir is making a difference when it really isn't. When you don't have a lot of spare income it's harder to afford the placebo effect.

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  16. Why has no one mentioned Selective Dorsal Rhizotomy? SDR was performed by Dr. Park at the St Louis Children's hospital this summer on my daughter who has spastic Diplegia and it has been nothing short of AMAZING! People fly from all over the world to be treated by him and he has been performing this modified SDR surgery for over 20 years and has done more than 2000 of these surgeries himself. I have personally seen kids in wheel chairs walk after this life changing surgery. He has also performed this surgery on adults with success. I found this doctor by CHANCE after being released by her neurologist stating that there was nothing else that could be done for her. Well, after searching for days, I kept finding this one name, Dr. Park. Not every person with CP will be accepted, but everyone should at least look into it as it does help some like my daughter. I still cannot believe how little information is shared within the CP community. But, when half of the patients in the hospital were foreigners when my daughter had her surgery, this tells me we have to change this in the US.

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Thanks for sharing!