MyCP Webinar: Priorities in Adult CP Research
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- Опубликовано: 7 фев 2025
- Cristina Sarmiento, MD, and her colleagues Jocelyn Cohen, JD, Mary Gannotti, PT, PhD, and Ed Hurvitz, MD, present their plans for a study that is funded by our new Accelerator Award program made possible by our partner Cerebral Palsy Alliance Research Foundation.
As an adult with CP eating well, proper sleep, and PT with the right team and the right medical team is extremely important.
Better education for providers when it comes to adults with CP.
Agreed. Lots of work but it is critical to better treatment for adults with CP.
@CPRN. Has there been researched for neurogenic bladder in Adult with CP?
Hi Caitlyn. The only research I can find establishes that it is not uncommon in adults with CP but no research on treatment. onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.2012.04360.x
I have that too.
Will you include people with speech and language disorders and AAC?
We plan to.
I would like to be in the focus group.
If you send mail to us at cprn (see website), we will connect you with the organizers.
I always wondered why cerebral palsy doesn't receive much attention and research, especially in the adult years. It seems to me that I have always heard about CP talked about as a an early childhood disease. I have so many questions and I would be very willing to assist in aspects of this research alliance. Does anybody feel that CP has become an orphaned condition?
As you probably could tell, I am by no means a medical professional, but I love to learn about medical research. I was wondering has there been any thoughts given to extracting the dead cells of the cerebrum or where the dead cells have occurred and replacing with new stem cells? I guess you know I'm talking about any variation of stem cell procedure or doesn't CP work and respond like spinal cord damage?
Hi Carol. We are not focused on advancing stem cell research but there are some folks from CP Alliance in Australia who are working in this arena. At this time we do not have an approved stem cell treatment for cerebral palsy. It's actually quite a complex field of study and what may sound like it should be straightforward, has not proven to be so simple. You may follow the work of Dr. Joanne Kurtzberg and her lab here in the US. You also may wish to read the following article offering a summary of our current state of stem cell research for CP that was published in a peer reviewed journal: www.tandfonline.com/doi/full/10.1080/14737175.2023.2234642
super insightful panel, it's always great to see research for adults with CP. I only wish there was more time for the q&a portion so it wasnt interrupted. adults w CP don't often get the floor🥲
This one ran a little long but we run them so that people on the west coast can participate too. Roughly everyone other one of our webinars is about adults and there are plenty of opportunities to interact.