Are CP advocacy efforts petering out because of confusion over which organizations to rally around?
Repost from Facebook post-April 13th, 2013
I am going to keep going with my thoughts and intention about bringing clarity about the US CP support/advocacy organizations. There will always be multiple organizations supporting a cause or trying to address a problem, but right now I am wondering if some of our private CP organizations can come together to begin to more effectively and efficiently mobilize our community to address some of the issues they are working to address separately (including CP Daily Living).
With lack of funds and support, the small list of organizations dedicated to CP research, funding and advocacy in the US, are struggling to meet their independent missions with a lot of muscle. Can they be more effective working in tandem on a regular basis? Can unifying their efforts bring our community together virtually and in person? Some of these discussions are underway which is exciting, but I want to ensure that for those of you who wish to add your voice, you have a space to do that. Some of the leaders of these organizations follow our page so certainly sharing your point of view here is helpful.
I personally see so many CP community issues that need to be addressed, including causation research, working on the language and approach to defining CP in the individual, lack of funding for advancing treatment, a need to create more standards of care specifically for CP (i.e the Botox article I shared the other day), addressing the needs of our adult CP population, addressing healthcare coverage gaps.
I want to get our community moving full speed ahead as efficiently and effectively as possible and it’s going to a lot of work to get us going because CP awareness and funding is needed.
Is a lack of understanding of independent missions or communication with families from some of these organizations part of the problem? Will pooling resources and working together help gather our community virtually and literally? Have parents and people with CP felt that they haven’t had an opportunity or know where to speak and with whom about these issues that affect their daily life? Besides RFTS I haven’t seen national organizations attempt to openly include input from parents, families, and people with CP as part of furthering the efforts of the greater CP community? Parents and families are a critical component of mobilizing change and support for disorders and other medical diagnoses. Cynthia has identified this critical component and brought it front and center to those people and organizations who were previously not focused on considering our input. Sure, RFTS focuses on the pediatric population, but her advocacy work impacts everyone with CP. She has been able to part the waters for other organizations to see the value in families, children, and adults with CP participating in a larger conversation.
At what point do we need to consider and make it our business to discuss what is and isn’t being done for people with CP and their families? I am making it our business today. You can begin by sharing your ideas or passing this post around and generating awareness and conversation. I see the value in getting some short-term projects going, but I also see the importance and necessity in getting smart about how we gather our small batch of funding resources and allocate them as a larger community. If we don’t discuss collaborative efforts as a community and enter into the conversation, we may end up with many tiny organizations continuously cropping up to address what they feel is independently important, but perhaps without the funding resources to effectively support any of those independent passions. I would like to see our community try and come together on what we largely can agree upon, and begin to organize our efforts so that we may be able to generate support for effectively addressing some of those issues.
Do you have thoughts or questions? Share them with everyone.
-Michele
I think first off that CP is a very broad category which makes it difficult to rally around. Although many children are put into the category “CP” because they don’t have typically developing movement skills, I think there is a core group who are diagnosed based purely on motor cortex damage occurring due to neural cell death in a typically developed brain. Those babies are the ones that did not “bounce” back from some stress before, during or after birth.
So what are would researchers pursue? That is a big question. There’s preventing CP and helping those who have CP and maybe there’s a connection between those two areas of inquiry. I also think a lot of the information being discovered about the brain these days can have direct application, but I’m not sure anyone is trying to make the connections.
I am seeing strong case by case evidence that the condition of the baby at birth might be one of the determining factors in how the brain copes with the stress of lack of oxygen or other traumatic event. Some babies bounce back and some end up with long term damage that interferes with motor function and are diagnosed with CP.
I’m not a scientist or researcher but have been studying nutrition, nutrigenomics, and epigenetics from the perspective of kids who are not learning typically. I am strongly advising my clients to try a B complex supplement that includes methyl activated B12 and folic acid (B9) as a test to see if their child might not have enough methyl enzyme for both processing and toxins and processing their Bs. My suspicion is that low methyl, caused by genetic predisposition, might be the key that determines who can weather those birth stresses and who cannot. The statics are currently that 1 in 3 people have the gene variation that would cause them to be low methyl producers. This would be even more significant in this age of chemical toxins all around us, and then these children often have to undergo more surgeries than typical developing children, which means metabolizing anesthetics out of the system as well. Damage from hypoxia is not limited to the CNS, it effects the Enteric Nervous system as well. These children are at risk for being way off in their gut function which will also effect the availability of necessary nutrients.
I would really like to see specific epigenetic and nutrigenomic testing done for children with motor issues. Right now we are just starting to ride on the coattails of those researching those areas for children on the spectrum for autism.
Hi Andrea. Thank you for your thoughts. I am not sure if any of us can determine how much CP being a broad category is the reason we are having advocacy issues. At the very least I want to try and bring clarity to what is being done and by whom in order to try and gather more support wherever possible. It may be that because CP affects people differently (some more and some less) that some families and individuals may have different degrees of motivation and philosophies about advocating for CP research. At the same time, what I am hearing repeatedly from families is confusion about who is doing what and with what money for CP, and lack of access to this information. I continue to get e-mails from parents who are shocked every time I post stats about how modest the funding is for CP research. At the very least, I wish to create a place where the picture is clearer and the stats and information about CP are as accurate as possible.
I think you pose some interesting ideas for potential research studies in the CP population.There are many ideas and hypotheses that have emerged from both clinicians and lay people that could prove useful in learning more about CP. However, without more money being directed toward research these ideas will remain at best, promising, but without proven benefit (or in some cases possible detriment) for the broader CP population. Our understanding of CP will definitely benefit from general neuroscience research and studies focused on children and individuals on the spectrum. From what I have begun to hear directly, scientists and clinicians focused on CP research are tracking these studies and many of them are forming their specific CP research from what is going on in other neuro-developmental studies.
I don’t think it helps that the so-called “Flagship” non-profit around Cerebral Palsy (I won’t name names), seems to want to disassociate itself with Cerebral Palsy. When, as a parent, I found out my daughter was diagnosed with CP, I was told to reach out to the local organization for information and for help, but they had nothing useful. I realize that CP can result in a wide range of disabilities, but at that new and scary time of our lives, I needed concrete information on CP. I did find one non-profit that is “less big” but more research-oriented, where I can get that information. But for now, every big non-profit I’ve seen seems to lump CP, Autism, and Down Syndrome together as one disability, and I think that gives a lot of families of newly-diagnosed children a mixed message.
I couldn’t agree more Marissa. What you have said here I have heard many parents repeat almost verbatim. One of the reasons I started this website was because we felt it was too difficult to find information and support resources we needed. I actually tweeted UCP and about how much I value about what they do but I really wish they would change their name because it is adversely affecting our community’s advocacy efforts (among other things such as causing parents confusion about who to go to for guidance etc). Some chapters are more specifically helpful than others to the CP community, but their national mission is not focused on CP. I wrote a facebook post about this around the time I wrote this one you commented on (I reposted it here). I wish our community had a national organization that brings everyone together. Is the non-profit you are referring to CPIRF? Oh, I just tweeted a few weeks ago that I was thrilled to see the Maryland chapter of UCP change their name to UC2 to more accurately reflect their mission! I hope others follow. There are a lot of politics associated with why they have kept UCP as their name. I don’t care about the politics at this point, I just want to see our community get ahead and know who is and is not able to offer the information and resources they need. Thank you for your comments!