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.