New to cerebral palsy, or experienced, our education section offers updated information about the care, treatment, and facts, for both children and adults.

A view of choppy waters with a windswept stretch of grasses, and hills in the distance under dark clouds in the fading sunlight

Defining Cerebral Palsy

[This post is the continuation of our Knowledge Translation Tuesday. Guest author Lily Collison, author of Spastic Diplegia — Bilateral Cerebral Palsy, continues the series on her journey with her son and cerebral palsy (CP).]

For a multitude of reasons, I believe it is very important for parents of young children and adolescents and adults with CP to fully understand the condition. I was that mom who didn’t understand my son’s diagnosis and therefore didn’t know how best to help him. My adult son now needs to have a good understanding to best help himself. When I was invited to write for CPRN to expand its knowledge translation objective, Paul (Gross) asked me to first write about SDR in adulthood because my son, Tommy had just undergone this procedure. Once I’d finished that series of posts, I debated whether it was best to work back to childhood or start from childhood. I was also conscious of recent data which showed that people who themselves have CP–adolescents/adults with CP are the biggest single group (58%) in MyCP. In the end, I decided to go back to the start and follow a logical sequence of subjects from childhood to adulthood. Issues in adulthood to some extent build on issues in childhood. It’s like the Wordsworth quotation “The Child is father of the Man.

Let’s start with the actual definition of CP. Over the years there has been much discussion of the definition of CP, and different definitions have been adopted and later discarded. The most recently adopted definition, published in 2007, is as follows:1

Cerebral palsy (CP) describes a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behavior, by epilepsy, and by secondary musculoskeletal problems.

(Here is a link to a table explaining each term in that definition.)

CP is a lifelong condition and there is currently no cure, nor is one imminent, but good management and treatment can help alleviate some or many of the effects of the brain injury. When the brain injury occurs is important. The consequences of a brain injury to a fetus developing in the womb are generally different from those of a brain injury sustained at birth, which in turn are different from those of a brain injury acquired during infancy. It is generally accepted that only brain injuries occurring before the age of two or three fit the definition of CP. A brain injury occurring after that age is called an acquired brain injury. This cutoff is due to the differences in brain maturity when the injury occurs. In my son’s case I’m not certain when his brain injury occurred–he was born after an uneventful pregnancy and delivery–most likely it occurred during pregnancy.

Returning to the definition of CP, although this definition is very useful, I’m not sure it sufficiently alerts us to the secondary conditions that may arise in adulthood. As O’Brien, Bass, and Rosenbloom (2009) explained, the definition was developed to be used in childhood—it was not intended to infer that progressive problems might not appear in adult life.2

(The photo is one I took yesterday evening at Rosses Point, Sligo, Ireland, where I live. Yeats had close connections with Sligo. The hill in the left background is Knocknarea at 1,073 ft. Tommy was very proud when he first climbed it as a child.)

1Rosenbaum P, Paneth N, Leviton A, Goldstein M, Bax M (2007) A report: the definition and classification of cerebral palsy April 2006. Dev Med Child Neurol 49 Suppl 2: 8–14.

2O’Brien G, Bass A, Rosenbloom L (2009) Cerebral palsy and aging. In: O’Brien G, Rosenbloom L, editors, Developmental Disability and Aging. London: Mac Keith Press, pp 39–52.

A golden-brown loaf of braided challah on a parchment paper covered tray resting atop the stovetop burners.

Adult SDR: update on my progress

This is the last in a series of blog posts on selective dorsal rhizotomy (SDR) in adulthood as part of Knowledge Translation Tuesday (KTT). Tommy Collison wrote this update at the recent five months post-op point. KTT will continue on CPRN on September 8, 2020.

Quickfire round:

Adult SDR: update on my progress

Challah Bread

  • Broadly, everything is great — zero complaints, except that gyms/pools/physical therapists are closed.
  • Generally feeling pretty solid on my feet. I had a fall a few weeks ago, but no ill-effects beyond some scrapes to my hand. I’ve been testing my standing endurance by cooking more — to the right is a pic of some challah I made last weekend. (Had the wrong kind of flour, it didn’t turn out just right. Reattempting right now with the correct flour: writing while it proves.)
  • I think it’s still a little bit early to try and guess at effects of the surgery, especially since it’s an apples-to-oranges comparison of my life pre- and post-surgery, but some things I’ve noticed:
    • More flexibility than before in certain muscles: imagine sitting on a chair and bringing your heel up onto the chair, as if you’re putting on a sock. I’m pretty sure I wouldn’t have been able to do that before.
    • General fatigue — this is the one I’m really excited about. Before surgery, if I had a big/ long day (gym → work for 8-10 hours → dinner with friends → home), I would feel it in my legs. Not pain so much as a… heaviness. Just a dog-tiredness. Not sure the right phrasing. I think that’s lessened or gone now. Yesterday, I hung out with friends in the backyard, went for a 6 mile cycle, and then walked downtown and back, getting back just after 10pm. I got into bed and it wasn’t the same sort of “whew, glad today is over” fatigue, where I feel grateful to be lying down and not having to do anything. There was general tiredness, but less muscle tiredness.

  • I’m staying down in Menlo Park, which is nice because it’s within walking distance (about a mile — 25 mins walk) to downtown, where I can get a takeaway coffee. I’ve had success with that sort of habit-stacking (need caffeine, also need to walk) and am walking downtown ~5 times a week.
  • Doing stretching and stretching in the interim. Probably not as much as I should, but PT and I are seeing progress, especially in the squats, and I’m sending her videos. Another interesting bit of progress: we used to practice sit-to-stands and they were SO difficult. The other day, I got out of a chair hands-free without thinking about it. Those little steps forward are so nice.

My Amazing Bike
  • Using two crutches + AFOs outside, and one crutch inside.
  • Got an AMAZING three-wheel bike that’s much safer, because three wheels mean that basically all balance considerations are taken care of. I have a nice 6 mile route that I’m doing 2-3 times a week, and I ordered a Peloton, so lots more cycling in my future.

Want to ask Tommy questions about his SDR? You can find him on the forum at https://cprn.org/ by posting a question with “Tommy” in the subject.

SDR surgery and early rehabilitation

This is the fourth of five in a series of blog posts on selective dorsal rhizotomy (SDR) in adulthood by Lily Collison — the inaugural author for Knowledge Translation Tuesday for the Cerebral Palsy Research Network (CPRN).  You can comment and discuss the article with Lily on MyCP.org.

Today I will explain a little more about selective dorsal rhizotomy (SDR) and then describe Tommy’s experience of SDR and early rehabilitation.

SDR only reduces spasticity, not other types of high tone. Of the various tone-reducing treatments (oral medications, botulinum neurotoxin injection, phenol injection, intrathecal baclofen, and SDR), SDR is the only irreversible tone-reducing treatment. What do the three words –“selective dorsal rhizotomy” mean?

  • Selective: Only certain abnormal nerve rootlets are cut.
  • Dorsal: “Dorsal” refers to the sensory nerve rootlets–it the sensory nerve rootlets that are cut. (The sensory nerve rootlets are termed “dorsal” because they are located toward the back of the body. The motor nerve rootlets are termed “ventral” because they are toward the front.)
  • Rhizotomy: “Rhizo” means “root,” and “otomy” means “to cut into.”

Putting it all together, “selective dorsal rhizotomy” means that certain abnormal, dorsal nerve rootlets are cut. SDR is a major operation, and the better the rehabilitation, the better the outcome is likely to be. Just as the operation itself varies between institutions, different institutions have different rehabilitation protocols post-SDR. Typically patients undergo intensive physical therapy lasting approximately one year starting in the first days after surgery.

Tommy travelled to St. Paul on Wednesday February 5, 2020 for tests on Thursday followed by his SDR surgery on Friday. The plan was that he would spend four weeks in St. Paul for the initial intensive rehabilitation and then return to work/continue his rehabilitation back in San Francisco, where he lives. My husband and I travelled to St. Paul to support him there. Tommy was admitted on the morning of surgery and wasn’t unduly nervous. (He even pitched the idea of a career change to the anesthesiologist–“Hey come to Lambda School–lots of people are changing career and learning to code” [Tommy works at Lambda School, an online coding school] ?.)

There are two SDR techniques, the cauda and conus, named after the level of the spinal cord at which each procedure is performed. The choice of technique is provider-specific but also depends on the patient. The cauda technique was used in Tommy’s case. Dr. Kim (neurosurgeon) performed the surgery with Dr. Ward (Physical Medicine and Rehabilitation physician) monitoring. The surgery involved removal of the back of the vertebrae (the lamina) in order to access the spinal cord. The dorsal nerve roots were dissected into rootlets, and the rootlets were individually electrically stimulated to determine whether they triggered a normal or abnormal (spastic) response. If a rootlet triggered an abnormal response, it was cut. If not, it was left alone. 30% of dorsal nerve rootlets from L2 to S1 were cut during Tommy’s six hour surgery.

For the first three days post-op, Tommy was confined to lying on his back to allow healing of the dura–the cover of the spinal cord. His pain level was manageable; he did have some stiffness in his back and some unusual sensations in his feet–numbness and hypersensitivity (likely due to the handling of nerve rootlets which would have caused temporary nerve damage). Wound healing progressed well. Three days post-op he was gradually brought to a sitting position and closely monitored for headache (to ensure that the dura was fully healed–no cerebrospinal fluid leakage). He received physical and occupational therapies as an in-patient. He wore knee immobilizers 50% of the time as per plan. He left hospital using a rented wheelchair four days post-op, a day earlier than scheduled. (Indeed, he was well enough to have dinner that evening in the restaurant of our hotel–a goal of Tommy’s.) Over the next three weeks, he attended twice daily out-patient physical therapy and did exercises at home. Posterior leaf-spring AFOs (PLOs) were prescribed and manufactured. During that time he progressed from using a wheelchair to walking with a walker and then to walking with two crutches. The altered sensations he felt in the immediate post-op period, diminished with time. Four weeks post-op (March 4th)–he returned home to San Francisco. Little did we know what was to unfold with COVID-19.

Here are some photos.

SDR surgery and early rehabilitation Day 4- Post op

Day 4 post-op: Leaving hospital.

Day 4 post-op: Leaving hospital.
Rough grey ocean waves crash against rocky brown-and-black cliffs under a grey misty sky.

Surgical decision-making

This is the third in a series of blog posts on selective dorsal rhizotomy (SDR) in adulthood by Lily Collison — the inaugural author for Knowledge Translation Tuesday for the Cerebral Palsy Research Network (CPRN).  You can comment and discuss the article with Lily on MyCP.org.

We hear a lot about evidence-based medicine. Evidence-based medicine combines the best available external clinical evidence from research with the clinical expertise of the professional. When Tommy was undergoing Single Event Multi-Level Surgery (SEMLS) at age nine in 2004, there were a number of outcome studies from different international centers supporting SEMLS. These outcome studies together with the expertise clearly evident at Gillette, gave my husband and me the confidence to take our nine year old abroad for surgery. This year, sixteen years later–whilst there are a large number of studies from many centers supporting SDR in childhood (including long-term outcome studies)–there is a dearth of research evidence supporting SDR in adulthood. I could find just two studies from one center. Research conducted by CPRN has shown that 5% of individuals who underwent SDR, were aged over 18 years. There is a need for more outcome studies evaluating SDR in adulthood.

Decision-making for undergoing surgical procedures such as SEMLS and SDR is interesting. Parents of young children and later the adolescent and adult themselves are co-decision makers with the clinician in the medical process. We, Tommy’s parents, were largely the decision makers for Tommy’s SEMLS at age nine. (He and I clearly recall discussing the proposed surgery on a long car journey–he was happy to proceed if we felt it was the right thing to do.) The decision to proceed with SDR this year was totally Tommy’s. Whilst it’s easy to understand that parents largely make the decision for children undergoing procedures and adults make the decision for themselves, there is a “grey area” when it comes to adolescents. Thomason and Graham (2013) made the very interesting point that adolescents must be given the freedom to make their own informed decisions about surgery and rehabilitation. They added that an adolescent who feels they have been forced into surgery against their will or without their full consent is likely to be resentful and may develop depression and struggle with rehabilitation. I fully support this view.

For Tommy’s surgery this year, he asked if as a “fly on the wall”, I would accompany him to the multidisciplinary appointment to decide if he was a suitable SDR candidate. Watching from that vantage point, a few thoughts struck me:

  • The evaluation truly was multidisciplinary. The three consultants discussed the surgery in detail together and with Tommy–it was a robust four-way discussion. The clinicians’ decision, that Tommy was a good SDR candidate was unanimous.
  • I was happy to observe that Tommy fully understood what was involved. When the possibility of SDR was first raised, he told me that he read that section in my book and felt it explained SDR very clearly for him (positive endorsement–our offspring are often our harshest critics!) Tommy was making an informed decision to proceed with the surgery–he was an effective co–decision maker in the medical process.
  • The fact that Gillette offers continuity of care for individuals with CP–from childhood right through to adulthood–is hugely important. Tommy has been receiving care at Gillette since he was nine. This continuity of care has benefits on so many levels. It also makes “handing over the baton for healthcare management” from parent to adolescent, so much easier.
  • As a parent, changing role from being an active participant in the medical process, to being a “fly on the wall” (and only then by invitation), takes discipline, but is so worth it.

Thomason P, Graham HK (2013) Rehabilitation of children with cerebral palsy after single-event multilevel surgery. In: Robert Iansek R, Morris ME, editors, Rehabilitation in Movement Disorders. Cambridge: Cambridge University Press, pp 203–217.

Author note: The photo was taken off the northern Californian coast. It was also there that I took last week’s photo of pelicans flying in V-shaped formation. One of the goals of SDR surgery is to reduce the energy cost of walking. Flying in a V-shaped formation is one of the tricks birds use to reduce the energy cost of flying.

A squadron of pelicans fly in a ‘V’ formation under a cloudless blue sky.

The “ideal” candidate for SDR

This is the second in a series of blog posts on selective dorsal rhizotomy (SDR) in adulthood by guest author, Lily Collison.

Selection criteria for SDR differs between institutions. Characteristics of the “ideal” candidate for SDR at Gillette include:

  • Aged 4 to 7 years.
  • GMFCS level I–III.
  • Primarily spasticity (as opposed to dystonia) that interferes with function.
  • Preterm birth history or injury in the late second or early third trimester of pregnancy.
  • Periventricular leukomalacia (PVL) confirmed by neuroimaging. (PVL is the brain injury that commonly results in the motor problems seen in spastic diplegia.)
  • Energy-inefficient gait.
  • Satisfactory muscle strength, generally defined as antigravity muscle strength at the hips and knees.
  • Fair or good selective motor control at the hips and knees. This means being able to partially isolate joint movement (not moving the joint in a complete pattern). This requires sufficient strength and motor control, i.e., not being reliant on increased spasticity for stability or movement.
  • Good ability to cooperate with rehabilitation.

Other than specific brain injury and age, Tommy met the selection criteria above. Tommy’s primary tone problem is spasticity (minimal dystonia) and the degree of spasticity was problematic for him. Though he does not have the classic brain injury (PVL), it was felt that his brain injury would behave similar to one, in causing spasticity. It would have been far more ideal had Tommy undergone SDR as a child. Tommy missed the opportunity to have it then, as we lived in Ireland and by the time I learned of SDR, he was already aged nine and needed orthopedic surgery to address the muscle and bone problems that had already developed. (Today, Irish children who meet defined selection criteria are able to access SDR in the United Kingdom.) SDR in childhood is better than in adulthood because the older the person, the longer they have been experiencing the negative effects of spasticity on their muscles. SDR in childhood is also better because rehabilitation after surgery (of any type) is more prolonged in adults than in children–adults heal more slowly than children.

Despite the above SDR in adulthood is still beneficial–it reduces the negative effects of spasticity on muscles over a person’s lifetime. Tommy is only 26 with a normal life expectancy. Apart from preserving his muscles, Tommy’s walking will hopefully become more energy efficient, which should translate into greater endurance in walking. Before SDR, his energy consumption in walking was 2.4 times normal. By one year post-op, it is hoped that this will have improved somewhat–it still won’t be normal (nor near normal) but any improvement is valuable. Although SDR is adulthood is beneficial, it is a big consideration. The most difficult short term challenges (i.e., following the surgery and during early rehabilitation) for independent adults following this type of surgery include loss of independence, loss of ability to care for others, and loss of income.

In the next post I’ll address surgical decision-making.

Lily Collison is author of Spastic Diplegia–Bilateral Cerebral Palsy

The skyline of the tall buildings of a city under a blanket of clouds

Knowledge Translation Tuesday: SDR for Adults

River Shannon trail in Limerick, Ireland
River Shannon trail in Limerick, Ireland

(This post in first in a series of knowledge translation posts that will be provided by our new guest author, Lily Collison). I’m Lily, mother of Tommy who is now aged 26. Tommy grew up in Ireland, studied journalism at New York University, and now lives in San Francisco where he works at Lambda School (an online coding school). Tommy has spastic diplegia, GMFCS level II. I recently published Spastic Diplegia–Bilateral Cerebral Palsy in conjunction with Gillette Children’s Healthcare Press. The book is a mixture of detailed medical information combined with a personal story, and all proceeds go to cerebral palsy (CP) research. I’m now going to be a guest author for the Cerebral Palsy Research Network (CPRN).

In February of this year Tommy had selective dorsal rhizotomy (SDR) at Gillette Children’s Specialty Healthcare, in Minnesota. SDR is a neurosurgical procedure that reduces spasticity by selectively cutting abnormal sensory nerve rootlets in the spinal cord. This procedure is mostly carried out in children and to a much smaller extent in adults. Recent research carried out by CPRN showed that 5% of those who have SDR were over 18 years. Tommy is therefore one of the minority of people who have SDR in adulthood. Over the next few weeks, I’ll write about SDR in adulthood and Tommy will also contribute (when he gets a break from working and rehabbing ?)

At this stage Tommy has a thick patient file at Gillette. At age nine he had single-event multilevel surgery (SEMLS) to address muscle and bone problems that had developed as he grew. At age sixteen he had orthopedic surgery to address knee pain, and at age eighteen a further minor orthopedic surgery. The possibility of SDR was first raised in Fall 2019, at a routine orthopedic appointment with Dr. Novacheck, Tommy’s orthopedic surgeon at Gillette for many years. A multi-disciplinary appointment was organized for December with consultants from neurosurgery, physical medicine and rehabilitation (PM&R), and orthopedics to evaluate Tommy’s suitability for SDR. The clinicians agreed that Tommy was a suitable candidate, and Tommy agreed to proceed with the surgery. SDR was carried out in February of this year, right before COVID caused widespread shutdown in March.

To receive email updates for these and are CPRN blog posts, you can subscribe.

Do you have questions for me about this post? I’m available on the MyCP.org forum (you will need to join MyCP if you are not a member) to discuss it.

CPRN Expands Knowledge Translation with Lily Collison

The Cerebral Palsy Research Network (CPRN) interview with author and mother Lily Collison, MA, MSc on July 8, 2020 was so popular that we have invited her to be a guest author / blogger on CPRN to expand our knowledge translation objective. A critical aspect of knowledge translation in medicine is making medical information and evidence more accessible to consumers — members of the community of people with cerebral palsy (CP). Ms. Collison’s book entitled Spastic DiplegiaBilateral Cerebral Palsy is the quintessential example of knowledge translation. As the mother of a young man with CP, she worked closely with the medical professionals at Gillette Children’s Specialty Healthcare to explain the cause, progression and treatment of spastic diplegia for parents of young children, and adolescents and adults with that subtype of CP. CPRN’s third strategic objective is to translate knowledge broadly and “tapping into the experiences and writing of Ms. Collison is a great way to begin to fulfill that objective,” said Paul Gross, chairman of CPRN.

Tommy Collison, a young adult with spastic diplegia
Tommy Collison, a young adult with spastic diplegia and son of author Lily Collison, chose to get a selective dorsal rhizotomy at age 25.

CPRN has invited Ms. Collison to provide series of blog posts that detail various stages of her son’s growth and progress with CP and the decision making process for various treatments he has received. These blogs will be presented in a reverse chronology starting with his recent decision to under go a selective dorsal rhizotomy — an invasive neurosurgery that seeks to reduce spasticity through the cutting of specific sensory nerve roots in the spine. The blog posts will include not only her experience and decision making, but also, where appropriate, commentary from her son Tommy. Each post will present various interventions, progress, personal stories and outcomes as well as highlighting the decision making process and the clinical evidence that was or was not available to make these decisions. Ms. Collison will also be available on the MyCP Discussion forum to answers specific questions about her book, decisions she has made and the blog posts that she writes. The blog series will begin next week on CPRN.org and be cross posted on MyCP.org. If you want to follow the CPRN blog, you can sign up to receive alerts of new posts.

A preview of a virtual meeting screen capture linking to blog post ‘CPRN Seeks to Translate Knowledge Broadly’

CPRN Seeks to Translate Knowledge Broadly

The Cerebral Palsy Research Network (CPRN) decided to increase its investment in knowledge translation following its annual investigator last week. For CPRN, to “translate knowledge broadly” means to reduce practice variation by implementing best practices and evidence-based medicine across the 26 sites in its network. Reducing practice variation has been demonstrated to improve outcomes which is central to the mission of CPRN. By tackling this in a whole network fashion, CPRN expects to improve outcomes for a broad population of people with cerebral palsy (CP) in North America.

CPRN held a modified version of its annual investigator meeting last week. Originally planned to be an in-person meeting of more than 40 investigators prior to the COVID-19 pandemic, last week’s meeting was attended by more than 50 investigators from more than 30 institutions via Zoom. Review of CPRN’s five-year strategic plan highlighted the need to invest more in knowledge translation. CPRN will pursue transforming its network into a learning health network – an established model for rapidly improving health care outcomes for a variety of diseases and conditions.

Peter Margolis, MD, PhD

Peter Margolis, MD, PhD

CPRN hosted Peter Margolis, MD, PhD from Cincinnati Children’s Hospital as a guest speaker and an expert on building Learning Health Networks. His presentation sparked an enthusiastic dialogue amongst investigators to establish new quality improvement initiatives including adult care for CP, hip surveillance and dystonia in addition to our existing initiative for intrathecal baclofen pumps. CPRN’s adult care initiative, led by CPRN Exec Committee member Ed Hurvitz, MD, has already begun planning the new initiative to improve treatments and outcomes adults with CP.  The other initiatives will establish leaders and working teams in the coming weeks.  CPRN expects its increased investment in quality improvement initiatives will build on its cerebral palsy registry, complement its research efforts and accelerate the improvement in outcomes for people with CP.

A preview image linking to blog post ‘Webinar: Cerebral Palsy and Epilepsy’

Webinar: Cerebral Palsy and Epilepsy

Adam Ostendorf, MD
Adam Ostendorf, MD

The Cerebral Palsy Research Network (CPRN) announced its third webinar in its MyCP Webinar Series entitled a “Report on Cerebral Palsy and Epilepsy” would be open to the public on Tuesday, May 5 at 8 pm via Zoom.  Dr. Adam Ostendorf, a pediatric neurologist at Nationwide Children’s Hospital, will present his findings about epilepsy in the cerebral palsy (CP) population from the CPRN Registry.  This 20-minute presentation will be followed by an open Q&A with Dr. Ostendorf.

Dr. Ostendorf is the principal investigator for the CPRN epilepsy study group which received funding from the Pediatric Epilepsy Research Foundation to extend the CPRN CP Registry to gather important data about children who also have epilepsy.  Epilepsy is the most common co-morbid condition with cerebral palsy occurring in more than 30% of patients.  But little research has been conducted on this unique population.  Dr. Ostendorf will provide a community focused presentation on the data gathered since his grant was funded in 2018 and the implications for future research.  The CPRN epilepsy study group includes neurologists from Children’s Hospital Colorado, Seattle Children’s Hospital, University of Michigan, and University of Virginia.

Interested participants need to register for the webinar to be sent instructions for joining.  Webinars will be recorded and posted for later viewing.  The MyCP Webinar series includes one presentation per month on different aspects of CPRN’s research studies.  Please join us!

Preview of the Cerebral Palsy Research Network and MyCP logos linking to blog post ‘CPRN Launches Community Education Webinars’

CPRN Launches Community Education Webinars

The Cerebral Palsy Research Network (CPRN) has announced a new community education webinar series focused on its findings and directions in research for cerebral palsy (CP).  One webinar per month will be presented by the principal investigator conducting the research and be followed by an open Q&A.  Interested participants must sign-up. These webinars will not only provide the community with an excellent opportunity to learn about important new research projects but also to interact with the clinician researchers conducting these studies.  Webinars will occur on weeknights at 8 pm ET.

The first webinar, scheduled for Wednesday March 25, is focused on the preliminary findings about adult health and wellbeing from the adult registry that was launched last year.  It will be presented by Dr. Mary Gannotti, a professor from the University of Hartford and the co-chair of the CPRN adult study group, who has led the development of the study in conjunction with several clinicians who treat and study adults with CP in addition to help from the CPRN Adult Community Advisory Committee.

The webinars scheduled for the rest of the year include:

Date Subject Speaker
April 23 Report from the CPRN Clinical Registry Garey Noritz, MD
May Cerebral Palsy and Epilepsy Adam Ostendorf, MD
June Practice Variation in Spasticity Management for Diplegics Paul Gross
July Functional Improved Related to Spasticity Treatments Kristie Bjornson, PT, PhD
August Practice Variation in Spasticity Management for Children who are not Ambulatory Sruthi Thomas, MD, PhD
September CP Genetics Michael Kruer, MD
October Speech and Participation Kristen Allison, PhD
November Family Attitudes About CP Diagnoses Bhooma Aravamuthan, MD, DPhil

MyCP is a web portal that provides the extended community of people with CP including caregivers and providers an open forum to discuss research, participate in research and read about the latest efforts led by CPRN. It is owned and operated by CPRN.