Rachel Byrne:
Hi everybody. My name's Rachel Byrne, I'm the executive director at the Cerebral Palsy Founda-tion. Welcome back to CPF live. I'm really excited today to welcome our guest, Jocelyn Cohen. Jocelyn is the VP of Communications and Engagement at the Cerebral Palsy Alliance Research Foundation. Today, we're actually going to be talking about the importance of collaboration in re-search. I think this is such an important topic because we have obviously lots of different organiza-tions around the states and different institutions. Really behind the scenes, we actually work really closely together to actually improve outcomes in research for cerebral palsy, but welcome Jocelyn.
Jocelyn Cohen:
Thank you so much, Rachel, for having me. I'm really excited to have this conversation and thank you for the kind introduction. The CP community is small, but we're mighty and powerful and it's always exciting to work with you.
Rachel Byrne:
Absolutely. Actually Jocelyn and I were just saying, we met about four years ago at an event and actually shared a cab in New York City together, which is quite a funny story, because I think if any-one knows New York City getting, around New York city is not a fun experience, but we were actu-ally up to have this sort of an amazing sort of hourlong car ride and got to know each other quite well then. It's really exciting now, to be working on a lot different projects together.
Jocelyn Cohen:
Yeah. Like you said, it's a small world and also just sharing a cab with someone is serendipitous. What Rachel left out, is she actually helped me through some snow and ice. Anyone else who has CP like me, knows how treacherous that can be. I always appreciate that.
Rachel Byrne:
Yeah, absolutely. Jocelyn, back then actually you weren't working within the CP community. Can you just sort of tell us a little bit about your role and your position and what you're doing at CPARF?
Jocelyn Cohen:
Sure. I've been at CPARF for a bit more than two and a half years. As you mentioned, I'm the VP of Communications and Engagement, so working with all different facets of the CP community. If you say to someone with CP, CP community, they think it means them, and the parents are also a CP community and the researchers are also a CP community. Bringing together every aspect, every person who has an interest in CP, is a huge part of my role. At CPARF, we fund the best US based researchers to what's possible for cerebral palsy and we're the foremost organization in the world that solely focuses on CP research. It's exciting to share a little bit of what we're doing and hear about what you're doing in that realm as well.
Rachel Byrne:
Yeah, absolutely. I've sort of got, and the foundation has a long history with CPARF and also Cere-bral Palsy Alliance in Australia. As you sort of said, it is really sort of a global community on who we work with. One of the projects that we actually work very closely together and work on different parts of the pipeline, is actually early detection intervention. For those of you that don't know, there was international guidelines of early detection that were published in 2017. This was actually led by the team from Cerebral Palsy Alliance in Australia, but had a large international working group. Because of those guidelines, we were actually then able to develop our Cerebral Palsy Foundation early detection network, and CPARF has actually then funded different components of early detection as well here in the states. It's really interesting to sort of see how that pipeline of information sharing and research is actually then leading to change. Jocelyn, do you want to talk a little bit about what work you're actually doing around early detection here in the US?
Jocelyn Cohen:
Sure. One of the things, as you mentioned, we're kind of working on different parts of the pipeline and Cerebral Palsy Alliance and Cerebral Palsy Alliance Research Foundation worked to fund of the General Movement Assessment, which can diagnose CP as early as 12 weeks. Just as a side note, I was diagnosed, what I thought was early at eight months, several decades ago. I have since learned that is somewhat late. The earlier we can detect and the earlier we can intervene, the better the outcomes for everyone with CP. One of the really exciting research projects that we are funding right now, it's near infrared spectroscopy. It is a project by Dr. Zach Vesoulis at Washington Univer-sity in St. Louis. It is a way with a sticker on a baby in the NICU's scalp, to measure brain oxygen levels in the first 72 hours of life.
Jocelyn Cohen:
This is a huge advance over prior detection methods, which were things like pulse oximetry, and maybe it was taken once a day, several decades ago. Having the constant monitoring of it, can have doctors be right on top of a situation if blood oxygenation levels do fall, they can intervene imme-diately. It is progressing to the next stage of its research and working with six different centers around the world. The idea that it's not invasive, you don't have to prick a child for blood or any-thing like that. The fact that it's something really easy to see, is very exciting for us and for the CP community at large still.
Rachel Byrne:
Yeah, absolutely. You talked about sort of this magic age around diagnosis. Really the age of diagno-sis in the US is still around the age of two. We know that now, realistically, that should be around three to six months. Because of the guidelines across our network, we were able to reduce it to under nine months now, which is sort of really quite an impressive change. But as you said, we need to keep working on these other modalities. For example, if we're able to give diagnoses at eight weeks, 12 weeks, the younger, underneath three months, it means interventions can start. I think that's really the exciting piece when we're thinking about what's next in the CP space around early detection intervention, it's actually these specific interventions that can happen. Obviously our orgs will be working sort of tirelessly to sort of make that happen. Guidelines actually would just published two months ago around early intervention and what's happening in the world. Watch this space because I really think there's going to be a lot of exciting interventions being of-fered quite soon.
Jocelyn Cohen:
Yes. Just to piggyback on the general point of early diagnosis. When I spoke with Iona Novak, who we both know very well and she's a legend in the CP research community, I said, "I was diagnosed early. I was diagnosed at eight months old." Then she said, "If you had a stroke, would you wait eight months to treat a stroke?"
Rachel Byrne:
Exactly.
Jocelyn Cohen:
I said, "Absolutely not. I wouldn't wait any amount of time." It's sort of underscored for me and re-positioned the way that I think about what early diagnosis is and what early insert intervention is. I think that's a great way to help people wrap their heads around it too.
Rachel Byrne:
Yeah. A hundred percent. I think, a lot of questions that we get asked though is, "Well, early detec-tion, early intervention is great, but what about the rest of us?"
Jocelyn Cohen:
Yeah.
Rachel Byrne:
"What about happening throughout the lifespan?" Obviously, it's really important to all of us to make sure that we are offering different components across the lifespan and what that looks like. Jocelyn, I know you are sort of funding some other exciting things that are happening. Do you want to talk about some of the other studies that you're currently funding?
Jocelyn Cohen:
Sure. One of the things that we're currently funding is a chronic pain study that's looking into the different ways that people with CP experience chronic pain. 75% of the around 18 million of us that have CP, experience chronic pain, I do as well. It's also looking into non-addictive ways to treat chronic pain, so that someone with CP doesn't have to choose between an opioid that will zonk them out and could potentially have other negative side effects, and one that will cure their pain. The idea is to cure someone's pain while allowing them to actively participate in their life.
Jocelyn Cohen:
We have five research areas that we fund. One is early detection, early intervention. One is chronic pain, as I mentioned. The next big area that I'm super excited about is technology. We are funding some research into exoskeletons, right now it is for pediatric therapy, but it is to make physical therapy more comfortable and easier for kids with CP. Anyone who has ever been a kid with CP, knows how uncomfortable physical therapy can be. Anything that could lessen the pain and discom-fort of that and make it easier to do, is a good thing.
Jocelyn Cohen:
The huge technology project that we're super excited about, is thought to speech technology. 25% of the people with CP in the world are nonverbal. Speech is a three prong process. The first part of the process is having a thought, the second is deciding to say the thought, and the third is saying the thought. For the folks with CP who are nonverbal, the speech gets caught between the second and third step, and thought to speech technology is something called a brain computer interface technology, which would be implanted at the surface of the brain and turn intentional thoughts, right after that second step, into real time text or speech. That is right at the clinical trial phase. It's a going to be a cerebral palsy clinical trial specifically.
Jocelyn Cohen:
It also just has wider implications for people with other disabilities in the world that are currently unable to communicate verbally. The need that this is filling is, there are eye gaze technologies that are impossible for many people with CP to use because they can't control their eye muscles. This fills a really important need and allows people, again, for participate in their lives in a more fluid way and be able to do it independently and not rely on other folks to do so.
Rachel Byrne:
Yeah, absolutely. I think it's interesting to sort of use that as an example, when we think about the pipeline of research, because obviously the bits around the basic science components as you said, we know the pathway around thought to speech and how to make it happen. Now it's now trialing different things and different interventions to see, "Okay, what are now the modalities that are go-ing to be used?" Just from a timeline perspective for our audience to hear, when do you think that will get to clinicals trial stage? Is this sort of like a five year pipeline? Is this something that you think will happen sooner?
Jocelyn Cohen:
It all depends on funding. That's the fun part of research, is it can't just move forward for free. The funding needs to come in to move it to clinical trial phase, but the approvals are in for it to go. It's all a matter of funding and however long it takes the funding to come in. That's one of our big fund-ing priorities in the next year, and hopefully we can accelerate it and get it as soon as possible, but there's so many variables. It just basically depends on the money
Rachel Byrne:
That as well, also though, it depends on obviously the researchers that you are working with to make that happen. Again, that is sort of a big collaborative effort that sort-
Jocelyn Cohen:
Oh yes.
Rachel Byrne:
... of been happening in quite a few different places.
Jocelyn Cohen:
Yes, I should mention the BrainGate consortium are the ones that are doing the study. It's scientists out of several premier institutions, including Harvard, Mass General, I believe Brown, Stanford, I may be missing one, but it is the BrainGate consortium. The principal investigator is Dr. Leigh Hochberg. I really should mention something like that when talking about the project. We're help-ing to fund it, but they're doing all the science.
Rachel Byrne:
Yeah, absolutely. It sort of comes back to our topic today, which is all about collaboration and re-search and how we can get ideas or how we can even start to develop answers to some of these big questions, is because everyone's actually coming together. Obviously having the researchers and institutions come together and have their different levels of expertise, have organizations like ours come together to either help support funding or also advocacy efforts to make it happen as well. I think also our communities, so obviously the people watching this live and also the commu-nities of CPF and CPARF, the stakeholders are such an important component and obviously those with cerebral palsy, to these research pathways. We can't actually work out what answers to an-swer or what questions to answer, sorry, unless we have your input. I think these are sort of the big, big things that as a community, once we come together, and once we really start moving along these pipelines, as I said, these big questions that we have, can actually start to get answered.
Jocelyn Cohen:
Yes, I wholeheartedly agree with that. One other thing that we're funding right now that is really exciting for the CP community at large, it is not science based, but it underpins the science, is an epidemiology and economic burden study that will look into the true prevalence and true lifetime cost of CP. The last study that was done, was released in 2003 by the Centers for Disease Control, based on data collected between 1987 and 1995. I cannot wrap my head around that, that is such old data and research relies on current data. We're in the midst of funding a study that will look into the true prevalence of CP in the United States and the true lifetime cost.
Jocelyn Cohen:
Now, based on that study that came out in 2003, the lifetime cost of living with CP over and above. If you were someone without CP, your cost would be zero. If you're someone with CP, this excess cost was estimated to be $1.2 million. I'm guessing that is a huge underestimate. Once we come out with that information, hopefully it will spur more research and more funding that you can ad-vocate for too, from national institutes of health and other governmental organizations, because we are so underfunded compared to other conditions that have a lower lifetime cost.
Rachel Byrne:
A hundred percent. We've actually got a very large advocacy effort going on currently. Anyone watching, if you can go to gogreen4cp.org, that actually tells you how to reach out to your lawmak-ers. As Jocelyn said, funding mechanism can come from private foundations like ours, but they can also come from federally funded, both the NIH and the CDC, to actually help with this research. The CDC actually doesn't have currently any dedicated dollars to cerebral palsy. Within our lan-guage this year, we are really sort of pushing for that to happen. That is what our community wants. If you get an opportunity, please reach out to your lawmakers, because it is really important for them to know just how important CP research is and the impact that it can have.
Rachel Byrne:
Jocelyn, talking about sort of research dollars. We spoke a little bit about obviously the thought to speech project and really sort of it's waiting in the wings currently sort of to be funded. As different orgs, we fundraise in different ways, but there is sort of a way that CPARF fundraises and it's cur-rently happening right now because it's a month of September, can you sort of talk a little bit about that?
Jocelyn Cohen:
Yeah. Right now, we're right in the midst of something called STEPtember, and the goal of STEPtember is to move together for cerebral palsy in any way that works for you. The challenge is to take the equivalent of 10,000 steps a day, every day for the remainder of the month. You can join STEPtember until it's October, essentially. The beauty of STEPtember is that you do not have to walk at all to participate in the movement part of it. There are 60 plus activities that convert to steps. I get nowhere near 10,000 steps a day, but my favorite little bonus is that physical therapy, and hour physical therapy converts to about 6,000 steps. I feel like that's about right, based on what I'm doing there with biking and stretching and all the effort that I'm putting in.
Jocelyn Cohen:
You can do things like yoga, swimming, stretching, dancing in your wheelchair, cleaning your house. If you've ever tried to change a fitted sheet or help someone change a sheet, I feel like that counts for all of your steps in a day. I think that everyone relates to that. Housework counts, cycling of any kind, including hand cycling, weight lifting. Also, if you were to do STEPtember and you do an activ-ity that's not listed on the converter, just pick something that's close to it.
Jocelyn Cohen:
The thing that I love, is that it is inclusive in that way. The other piece of it is, doing the activity and getting moving, does make you feel better. Even if you're just moving a hand or a finger, you're moving a little bit more than you were moving the day before. Then on top of that, we challenge people to share what they're doing during STEPtember, to raise funds for CP research. I have not checked this morning, but I think we were at 1.16 or $1.17 million raised so far, and we want to raise as much as possible so that we can expand the number of projects and the kind of projects that we fund at CPARF. If you're interested in joining us or even just donating, you can go to steptember.us to do so.
Rachel Byrne:
Yeah, absolutely. I think it's important to realize how a lot of this research does get funded. We also know if we want to sort of get pilot project funders. Some of these original ideas, they're not going to get large federally funded grant. It's really important for organizations like ours, to be able to that research and see that funding so that actually it can start. A lot of the time, people have wonderful ideas, it's just the fact that it can't actually start. There's something else though that I sort of want to remind our community about. We have our CP community survey. That is for you to tell us what you want us to focus on with research. Please, if you get an opportunity, fill in that community survey.
Rachel Byrne:
The other big thing that's sort of coming up, which I suppose is a nice way to sort of celebrate the end of STEPtember, is World Cerebral Palsy Day. World Cerebral Palsy Day is October 6th this year. It's really a day of celebration where internationally, we all get together and sort of commit to what we are going to do this year. The hashtag for world CP day is Millions of Reasons, because there are 17 million people in the world and over a million people in the US with cerebral palsy. As a community, if we can all come together, we can absolutely advance research in really quite a dramatic way. Jocelyn, speaking of what's next, what do you see as sort of being the pipeline for CPAFR, sort of thinking about what's next, along that research?
Jocelyn Cohen:
In addition to the prevalence research and all of the ways that can be applied, because there are a number of different parts of the field that it could be applied, the idea of studying aging in cerebral palsy is something huge. We are dedicated to funding research for every age and every stage of CP, from birth on through every decade that someone lives. For me, as someone with CP, I started ex-periencing aging at around 30 and thought it was some other condition. My doctor said, "With CP, that's age," and that a really unwelcome surprise. In ways that we can figure out how to maybe po-tentially prevent premature aging or prevent some of the conditions that co-occur with aging in CP, like arthritis, things like that. Also, looking into research of various conditions that might be more likely to occur in people with CP as we age.
Jocelyn Cohen:
When we say age, maybe it's a little bit younger. It's things that people haven't necessarily paid a ton of attention to up until this point. It's necessary because a child with CP turns into an adult with CP and has to deal with a world that's not built for them, and a world that doesn't know as much information as it should. As much as we can uncover about aging in CP and getting that in-formation out into the community and the world, then I will feel like we accomplished something huge. It's a big undertaking. There are so many different angles to come from. I know it's something that your organization is also interested in as well.
Rachel Byrne:
Yeah, definitely. I think us orgs actually coming together, sort of for example, pain and CP, we actu-ally came together now, I think it must be five years ago, both our organizations and the American Academy of Cerebral Palsy and Developmental Medicine to really start developing that research agenda. Now, it's wonderful to see how that has progressed. I completely agree with you when it comes to aging and CP, we really need to actually think about, "Well, how can we work together on this?" I know you recently had one of our SAC members, Mark Peterson, on for an Instagram live I think it was. I highly recommend everyone to go watch that because the information that you two sort of spoke about, about what is happening with mental health and adults and all those different things, is so important and absolutely something hopefully, that we'll be able to collaborate on and create a network on to start solving some of these problems.
Jocelyn Cohen:
Absolutely. It is up on YouTube or will be up on YouTube once you sign off from this Facebook live. We're also posting it on our socials. It was a huge Q and A. He answered a ton of different ques-tions. I learn something every time I speak with him, I count myself lucky as having connected with him after an AACPDM conference a few years ago. There's the aging that's related to CP specifically, like I mentioned, premature muscle aging, potentially premature joint aging potentially, but then how does a primary care doctor look after us? Are the standard tests, the right tests? These are things that researchers are also looking into and that he was talking a bit about during this webinar.
Jocelyn Cohen:
I encourage everyone who's either a parent of someone with CP, because your child will become an adult, or adults with CP or allies of people with CP, to just check it out and learn a bit more about what's going on in the space and hope that there's more to comment. Rachel, you men-tioned mental health. If you wanted to speak a little bit more about that too, because we did touch on that as well in the webinar.
Rachel Byrne:
Yeah, definitely. Mental health has been a priority that our community has told us about, particu-larly obviously with the pandemic and everything that sort of happened over the last 18 months, I think everyone, whether mental health issues are becoming more prevalent or whether there's ways now where we really actually really need to be taking care of ourselves. We are working actu-ally with Mark and we'll be starting with different members of our SAC to put together a network, looking at mental health and aging, and really sort of think about, "Well, what services can be pro-vided now, but also what are the gaps?" One of the big things that we focus on at the foundation is implementation. "All the wonderful research that is getting done by orgs like yourself and different institutions, how can we actually make sure they get implemented? How can we make sure those services actually become standard of care?" That's sort of a really important part, I think, of the puz-zle that our foundation focuses on.
Rachel Byrne:
Yeah, really excited to sort of see in the next 12 months, A, being able to provide the community the current services that are out there, but then also, thinking about developing new ones and how that can be developed really for adults. As we know, cerebral palsy is the most common physi-cal disability across the lifespan. We need to make sure that we are providing that level of care that we see for children, all the way up until people are in their fifties, sixties, and seventies and beyond.
Jocelyn Cohen:
Yeah. One of the things that I also count myself fortunate to, have connected with a lot of different parents of children with CP. One of the things I them is, "I know you don't want to add another doctor to your list right now, another medical appointment, but I urge you when you're scheduling those speech and OT and PT appointments, to put mental health into the equation, because there's a lot of things that kids with CP go through that can be traumatic. You don't understand them in a way that you would as an adult." Physical therapy is painful. If you can't separate that that pain is helping you and not just hurting you, that's going to affect you. Surgeries are obviously painful. Re-hab is painful. Being different when you're younger, if you have no one else with CP around you, that can cause some issues.
Jocelyn Cohen:
Having a mental health professional involved from the beginning, will help stave off those issues, and also give your child someone to talk to who's experienced in a different way than you are as parent, like as an additive and a supplement. As much as you can do that, I recommend it just as an adult with CP, not necessarily from my professional position. Also, I'm not a medical professional, I'm a word person, but I think you just want to look at it holistically. It's not just about getting your kid to move in the best way possible or the easiest way possible, or to be able to potentially zip a zipper, button a button, or say a word, it's about the whole person and what they're experiencing and acknowledging that it can be heavy sometimes. When you're a kid, you don't necessarily have the vocabulary to express that.
Rachel Byrne:
Yeah, absolutely. There are resources available on cpresource.org, which all our international ex-perts actually contribute to. There's a mental health article on their written by Sarah Kim, that ac-tually Jocelyn, you attributed to. It really is a place where families, obviously anyone who has cer-ebral palsy, and even doctors can go to find really, really valuable information across lots of differ-ent topics, mental health being one of them. Please, if you haven't already, go to cerebralpalsyre-source.org and have a look and check out, definitely some of those articles that sort of go into a little bit more, not just the medical side of things, but also people's stories and why these different components are important. Jocelyn, as always, it is a pleasure talking to you. I feel like you and I could keep talking publicly for-
Jocelyn Cohen:
Hours, days.
Rachel Byrne:
... hours and hours, but it has been absolutely wonderful. As I said, it's really exciting to see, I sup-pose, the cerebral palsy research community starting to come together, thinking about ways we can collaborate both within the US, but on an international scale, to advance all these different topics and advance these questions so that our communities can get the best possible outcomes.
Jocelyn Cohen:
It is really exciting. Over the last two and a half years, just being deeply immersed in this in a way that I hadn't been as an adult with CP, has been enlightening. The thing that I love the most about my role, is that I get to use my voice and experience to help other people like me, and to also help the generations coming up behind me. The fact that we can work with you to do similar things and advance the cause for people like myself and people I will never meet, is something that's real-ly powerful to me.
Rachel Byrne:
Amazing. Well, obviously we are excited to hear how much is raised through STEPtember this year. If you haven't joined, go check it out. Also Jocelyn, I'm sure we'll be talking again soon.
Jocelyn Cohen:
I am. Sure. If you don't follow us yet, you can find us at ResearchForCP on Facebook, Twitter, and Instagram.
Rachel Byrne:
Amazing. All right. We'll, in the comment section, make sure we put all the different websites and tag everyone. Yeah, everyone hope you have a great day and we'll see you soon.
Jocelyn Cohen:
Thanks for having me Rachel, take care.
Rachel Byrne:
All right. Bye.
Jocelyn Cohen:
Bye.