Wednesday, May 21, 2014

CP in Motion

As mentioned in my previous post, I recently attended the CP in Motion Conference and Workshop entitled Let's Talk CP 2014: Translating Science into Family Life at the IWK Health Centre in Halifax, NS.

This was the fourth annual conference for the NeuroDevNet CP Discovery Project. The Discovery Project is a national project to understand the genetic and environmental causes of cerebral palsy, as well as the best methods to improve outcome through prevention, regeneration and rehabilitation.

The conference brought together nationally and internationally recognized experts from across Canada. The focus was on an up-to-date exploration of current research into the causes of cerebral palsy, advances in therapy, and future implications for prevention and treatment.

The conference was intended for anyone involved in the care of children and young adults with cerebral palsy, including health professionals (physiotherapists, occupational therapists, speech / augmentative communication therapists, recreation therapists, social workers, nurses, developmental pediatricians, neurologists, general pediatricians, physiatrists) and especially families of children and young adults with cerebral palsy.

The conference took place on May 15th and 16th, and was comprised of presentations by a number of healthcare professionals, researchers and scientists. Full program details can be seen HERE.

Attending this conference was an incredible experience. I don't think I really knew what to expect going in, only that I was happy to represent our provincial CP Association, and be present among such a distinguished group of individuals. 

A highlight for me was the session on stem cell research. Dr. Crystal Ruff outlined the current status of stem cell treatments for cerebral palsy, and described the clinical trials that are currently taking place. I have to say, she lost me when she spoke about "pluripotent cells" and "oligodendrocytes", but what I did take away was the fact that exciting things are happening in the world of stem cell research!

Experiments with neural stem cells in animal models have shown to be promising. For example, human stem cells were able to replace the myelin in brains of mice that had suffered blood and oxygen deprivation, normalizing motor function and extending their life span.  

There is, however, a great difference in what can be done with a mouse in a lab, and what should be done to a human being. Stem cell treatments are not yet readily available. Clinical trials must first and foremost prove that a treatment is safe. It is absolutely essential. It is also possible that treatments that work perfectly in mice may show no benefit when used in people. It is still a long ways away, but eventually, the hope is that stem cell treatments will be able to be used as part of a larger treatment program, and will be combined with various other treatments to provide the best outcome. We would be looking at improvements, rather than a "cure". Still.. very exciting for individuals living with cerebral palsy!

Also of note was Dr. Darcy Fehlings' presentation on Constraint Induced Movement Therapy (CIMT). This type of therapy has proven to be extremely effective in individuals with hemiplegia (impairment of one side of the body). CIMT involves physical constraint of the less affected arm to increase the use of the more involved or affected arm. All studies to date have shown positive change in arm and/or hand function in children with asymmetric upper extremity motor control.

What I really liked and appreciated about this conference was that it was true to it's name - "Translating Science into Family Life". What does all of this science and research mean for families who are living with cerebral palsy? Dr. Peter Rosenbaum brought it home for me when he presented his ideas on "The F-words in Childhood Disability". His approach is that there is too much emphasis placed on "fixing" things, when instead we should promote development, child and family strengths, achievement, and being family-centred. The 'F-words' that he speaks of, which are so important in child health, are function, family, fitness, fun, friends and future! His hope is that these concepts will be incorporated into every aspect of clinical service, research, and advocacy regarding disabled children and their families. I like you, Dr. Rosenbaum. I like you a lot.

There was an open discussion around the question, "Does / should disability define identity?" Several participants shared their thoughts, including our own Dr. David Buckley. I think that while most of us believe that a disability shouldn't define a person, in many cases, it probably (and unfortunately) does. Just as someone's ability shouldn't define them, no one should be defined by just one aspect of themselves. We are all individuals, with different needs and wants and thoughts and abilities. Putting 'dis-' in front of the word makes it seem negative, when it should not be seen that way.

Overall, this conference was informative, it was thought-provoking, it was emotional, and it was relevant. It brought doctors and researchers together with family members and individuals living with cerebral palsy. It put a face behind the research, on both sides.

I am better for having been there, and I am looking forward to weaving all that I learned last week into new experiences right here at home.

Halifax, you were lovely!

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