Dr. Gannotti with long dark hair, purple sweatersand glasses explains her cerebral palsy study to a community member.

Article Details Successes, Challenges, and Future Directions of Our Community Registry

Dr. Gannotti standing in a purple sweater explain her work in cerebral palsy to a mom and adult son in a wheelchair

Dr. Gannotti stands among three of her five scientific posters explaining her work to community members who attended our annual meeting.

The Cerebral Palsy Research Network congratulates Dr. Mary Gannotti on her recent publication, “Cerebral palsy research network community registry adult surveys on function & pain: Successes, challenges, and future directions” in the Disability and Health Journal. This article is the third in a series describing the preliminary results from surveys gathered under her leadership in the network’s study of wellbeing and chronic pain in adults with cerebral palsy (CP). This article describes not only the creation of our Community Registry, but also the development and execution of this study with adults who have CP.

Dr. Gannotti has championed the longitudinal study of adults with CP since the founding of the network in 2015. This publication provides an overview of the multi-year process to build a core set of patient reported outcome measures that capture the health of wellbeing of adults with CP. In addition, it describes some key high-level findings about chronic pain and how these findings have led to numerous additional studies that are currently active in the network including two different studies of lower back pain. Dr. Gannotti has been proactively promoting the potential for secondary analysis of this dataset and a tireless mentor of junior faculty inside and outside of the network. The prior two publications from the adult study were first authored by Dr. Cristina Sarmiento who is a physical medicine and rehabilitation clinician at Colorado Children’s and University of Colorado Health System.

The commentary on the registry also describes challenges in creating an online registry such as diversity issues across race, gender, socioeconomic status. She balances descriptions of the challenges with planned efforts to overcome the challenges. Dr. Gannotti has secured funding both from durable medical equipment provider Rifton and the American Physical Therapy Academy to invest in overcoming these weaknesses by expanding recruitment methods.

Members of the community interested in reading the article can review it here until July 15, 2024 at which point it will only be available a fee or to subscribers to the journal.

Dr. Sarmiento with brown hair pulled back in a navy blue blazer and a broad smile

Adults with CP and Functional Decline

Cerebral Palsy (CP) is often defined in part as an early non-progressive brain injury or disturbance in neurological development that impacts the areas of the brain responsible for movement, posture and coordination.  There may be other areas of the brain affected as well. But as adults with lived experience with CP describe, the description of a static brain injury distracts from the reality of the downstream effects that it causes on the body.  The CP Research Network was founded in part to increase the amount of research about adults with CP.  Our patient-centered research agenda, Research CP, that was published in 2018 made clear that adults with CP wanted research to be focused on issues surrounding aging and functional decline.  In 2019, under the leadership of Drs. Mary Gannotti  and Deborah Thorpe, and in collaboration with many adults with lived experience, the CP Research Network launched its Adult Study of Wellbeing and Pain as its first study in our Community Registry.  This longitudinal collection of surveys is intended to capture current health and wellbeing for participating adults with CP and track it over time.   While the vast number of people living with CP are adults, recruiting sufficient numbers and diversity has proven challenging.  But with funding support from Rifton and the American Physical Therapy Association, and in collaboration with the CP Foundation, we have amassed enough participants to begin publishing some preliminary findings.

 

Dr. Sarmiento smiles broadly with her brown hair pulled back, in a navy blazer and light colored swoop neck blouse.

Dr. Cristina Sarmiento is a rising young investigator in the CP Research Network with her second network publication and an Accelerator Award granted in October. She focuses on issues of transition and adults with cerebral palsy.

In November 2023, Dr. Cristina Sarmiento, a young investigator in our network and Dr. Gannotti, an investigator focused on adults with CP, published initial findings on chronic pain in adults with CP.   More recently, Drs. Sarmiento and Gannotti published again on the findings related to functional decline in adults with CP in the Disability and Health Journal.   Their analysis shows that functional decline in mobility was the most common symptom reported among the adults surveyed.  Functional decline was most pronounced in Gross Motor Function Classification System levels III and IV.  These findings are just a few of the high-level results described in the article.  The article is available for free viewing until April 21, 2024.  Thanks to Dr. Gannotti for her persistence in recruiting for this study and for mentoring  Dr. Sarmiento and other junior faculty. Together they have turned our data into valuable information for the community and for researchers to understand more about what adults with CP are experiencing with their health and wellbeing.

We want to hear from you!

The adult study of wellbeing and pain mentioned in this blog post is still recruiting and interested participants can learn more or sign up at our community portal: MyCP.org.

A stack of grey rocks, also known as cairns, sit on a rock with waves breaking in the background on a foggy day.

Mindfulness: A Key to Wellbeing in Cerebral Palsy

Headshots of two women from the National Center for Health, Physical Activity and Disability involved in mindfulness training

Emily Hornsby, on the left, is a mindfulness instructor and Tracy Flemming Tracy on the right, is a healthcare inclusion specialist.

The Cerebral Palsy Research Network and its partner, the National Center for Health, Physical Activity and Disability (NCHPAD) will offer a MyCP webinar on mindfulness next Monday, February 12 at 8 pm ET. The practice of mindfulness, a type of meditation, is easy to learn and is proven to reduce stress as well as provide other wellbeing benefits such as relaxing the mind and body. NCHPAD healthcare inclusion specialist, Tracy Flemming Tracy, OT, PhD(c), will give an overview of NCHPAD Connect which provides access to a variety of health programs of which the MENTOR wellbeing program is the cornerstone. Mindfulness instructor Emily Hornsby will discuss the benefits of mindfulness and lead the participants through a mindfulness practice session during the webinar. Interested members of the community can join the session by registering.

The “M” in the “MENTOR” program offered by NCHPAD is for mindfulness and a key component of the education in this remarkable program offered to physically disabled members of the community. The MENTOR program also offers training in exercise and nutrition as well as providing wellbeing coaching during the eight-week free program. The CP Research Network worked with NCHPAD to pilot the MENTOR program for the CP community in 2022. In 2023, NCHPAD and the network partnered to introduce the NCHPAD Connect programs with a special focus on the MENTOR program to members of the CP community.

In addition to her role as the Healthcare Inclusion specialist, Ms. Tracy is also a licensed Occupational Therapist and a PhD Candidate in the School of Health Professions at the University of Alabama at Birmingham. Over the past 7 years, she has focused on research involving telerehabilitation and its promotion among people living with physical disabilities. In her current role with NCHPAD, she has been able to implement a participant-centered approach to recruitment, program delivery, and retention to enrich the participant experience and collaborations with healthcare and organizational partners.

Emily Hornsby is the Mindfulness Curriculum Coordinator for the MENTOR Program, a certified mindfulness meditation teacher including the mindfulness classes for the MENTOR Program. She has worked with individuals who have been severely injured and disabled through her previous work as a personal injury attorney for over 25 years. She is passionate about teaching mindfulness to participants of the MENTOR program. Through mindfulness practices it is Ms. Hornsby’s intention that participants will discover more freedom in how they respond to external stimuli and that they will find more clarity, peace and acceptance in the face of difficulties in their life.

Please join us for this unique session of information and mindfulness practice. The speakers will be available to answer questions about mindfulness, MENTOR, and the other programs available to the community through NCHPAD Connect.  A recording of the webinar will be available on our YouTube channel or click on the link below.

Mindfulness
Night sky with colorful fireworks

Happy New Year! 2023 in Review

As we turn the page on 2023, we look back with much appreciation for all that our extended community is doing to accomplish our mission of improving the health and wellbeing of people with cerebral palsy (CP) and their families. Many of you have engaged in the work of improvement in care and new knowledge generation through creation of or participation in studies. We thank you all for your efforts, your willingness to share ideas and resources with your colleagues and researchers, and your unrelenting drive to make life better for people with CP.

We kicked off the year with an impactful strategic partnership with Cerebral Palsy Alliance Research Foundation (CPARF) which is the largest private funder of CP research funding in the United States and a disability technology accelerator. The CP Research Network has fundraised together with CPARF as part of their STEPtember campaign and CPARF has supported all of our existing research efforts as well directly funded three new studies – two for adults and one for children.

Our research program benefited from the guidance of our data coordinating center at the University of Pittsburgh. A big shout out goes to Dr. Stephen Wisniewski and his whole team at Pitt for their innovative perspective on study designs, advancing our data collection and reporting, and increasing the scalability of network to enable more clinicians and community members to participate in making new discoveries in cerebral palsy. We also benefited from the addition of Dr. Joyce Trost to our research team. Dr. Trost leads our registries which have grown substantially in 2023 and underpin all our work. Alongside her, our scientific director Dr. Kristie Bjornson and Quality Improvement director Dr. Amy Bailes, strengthen our research pipeline and care improvement efforts with their related expertise. Together this team has overseen the development and advancement of 31 studies and improvement efforts including 20 newly initiated THIS year!

What does all this research activity mean to you? First that the CP Research Network is serious about changing outcomes through care for people with CP of all ages. For adults, the network is very focused on pain and its impact on function. Participating centers increased the assessment of pain in adult visits from 24% to over 90% this year and have been funded by CPARF to standardize the classification of that assessed pain so that it can be treated effectively. For children, the network is improving the dystonia diagnosis and working toward network surveillance of hip dislocation which can be a painful result especially for children with CP that are less mobile. Our improvements in care are being built into the electronic medical record system to make the clinical assessment of pain, diagnosis of dystonia and surveillance of hips, part of the standard of care for patients at CP Research Network hospitals. Three new publications this year highlighted just some of the research and improvement in the network including the effort to reduce infections after baclofen pump surgeries, chronic pain in adults, and a study of practice variation in selective dorsal rhizotomy.

Our education and engagement programs have seen large increases in enrollment in MyCP – our interactive web portal for personalized information and participation in research. Our monthly MyCP webinar series has engaged hundreds of community members in live discussions and gathered more than 7,000 views on YouTube this year. Our CP Toolkit continues to be our most often downloaded educational piece helping families understand the meaning of a CP diagnosis.

Finally, our partnership with the National Center for Health, Physical Activity and Disability provided incredible health and wellness opportunities to adults with CP. While only 16 people took advantage of the fantastic MENTOR program that teaches participants about mindfulness and how to get sufficient adaptive exercise and nutrition for improving one’s health, these MENTOR participants raved about the classes and the result, so we hope to triple the number of participants in 2024!

The timeliness of MENTOR has been invaluable to me, given my life stage, CP journey, and the additional impact of my other health conditions. The program has equipped me with the necessary skills to manage these challenges, such as mindset, activity levels, and nutrition. Additionally, the one-on-one opportunities to meet with staff have helped me fine-tune my approach.
Marji – MENTOR program graduate

We have exciting plans for 2024 including much deeper involvement of the community in our research program starting with opportunities to attend our annual investigator meeting in April and participation as co-investigators on developing projects. We anticipate a lot of progress, improvement, funding and results from our myriad research projects under development. And at least two new toolkits will be launched this year!

A banner about nutrition in cerebral palsy features a colorful bowl of vegetables and legumes.

Growing Up Well with Cerebral Palsy: Improving Nutrition, Health, and Wellbeing

A balding man with dark rimmed glasses smiles broadly in a white lab coat with a colorful striped tie.

Dr. Richard Stevenson, a developmental pediatrician at UVA, will present on the role of nutrition in health of children with cerebral palsy.

The Cerebral Palsy Research Network is excited to announce its November MyCP webinar entitled “Growing Up Well with Cerebral Palsy: Improving Nutrition, Health, and Wellbeing” with Dr. Richard Stevenson, Developmental Pediatrician and Division Head – Neurodevelopmental and Behavioral Pediatrics at the University of Virginia Health. The webinar will take place on Tuesday, November 14, at 8 pm ET. Dr. Stevenson has been leading efforts in the network to investigate the role of nutrition in overall growth and health for children with cerebral palsy (CP).

Growth is considered an integral indicator of nutrition, health, and wellbeing in children. The regular measurement of growth and comparison to reference data is a key component of health maintenance in children across the globe. In general, if a child is growing well compared to their peers, then they are considered to be disease free, adequately nourished, and living in a safe and “good enough” environment. Children with cerebral palsy are smaller in stature compared to their peers and in proportion to the severity of their motor impairment. But this raises many questions:

  • Is this growth pattern a problem that is modifiable?
  • Is the difference in growth due to poor nutrition, due to medical co-morbidities, due to poor activity levels or other factors that can be manipulated?
  • Does this difference in growth for children with CP matter?
  • Is it associated with poor health or with differences in quality of life?

A part of the overall differences in growth in people with cerebral palsy is the manner of growth and maturation of bone and muscle, and that bone and muscle problems (e.g. spasticity, contracture and osteoporosis) contribute to chronic pain and decreased mobility over the lifespan. Could these long-term problems be mitigated through childhood management of diet and physical activity?

Dr. Stevenson will review current knowledge on growth and nutrition and the relationships among growth, health, physical activity, and wellbeing in children with cerebral palsy. He will also discuss knowledge gaps and opportunities for additional research and improvements in how we care for children with cerebral palsy with the goal of improving health and quality of life across the lifespan. Dr. Stevenson also looks forward to community input on these questions and more. To join the webinar, please register using the form below or at https://cprn.org/mycp-webinar-series/. A recording of the webinar will be posted to our YouTube channel within 24 hours of the presentation.

Growing Up Well with Cerebral Palsy

Make a Difference: Join Our STEPtember Fundraising Team

A blue tile with exercise icons in the background and text to emphasize there are more than 80 ways to move.We invite you to join us to make a difference in cerebral palsy (CP) by helping to raise funds for CP research through STEPtember. STEPtember is an activity-based peer-to-peer fundraiser that happens throughout the month of September. Donations support us through our strategic partnership with Cerebral Palsy Alliance Research Foundation (CPARF) as they are the leading private funder of CP research in the United States. Participating in STEPtember has multiple benefits:

  • You will advance research for CP,
  • You will raise awareness about CP,
  • You will stay active and be able track your progress.*

We have created a CP Research Network team for STEPtember. You may join our team as an individual or form your own team under the CP Research Network team (you will see these options on our join page). STEPtember comes with an iPhone app to help you monitor and share your activity on social media or with other team members. And while the name includes “step”, you get step credit for any activity including biking, rolling, swimming and lots of other forms of activity and exercise. It’s a great way to enhance your fitness and have challenging fun with friends, family and co-workers.

Registration is now open. Build your team in August and get ready to get more active and start fundraising in September. Get recognized with shirts and jackets for your fundraising achievements! Please join us and help make a difference in CP research!

* We really want to emphasize that even though the name is “STEPtember”, we support more than 80 ways to stay active and transform it into step equivalents to make the opportunity available to people of all abilities.

Webinar: Making a Difference with MyCP

A headshot of a smiling man with grey eyes and short dark hair. Paul Gross is the President & CEO of the CP Research Network.

CP Research Network CEO Paul Gross will explain how both community members and clinician researchers can get the most out of MyCP.

This month’s webinar turns the table on our usual “clinician scientist’s report on their study results” and focuses instead on how you can contribute to science as a member of the community or as a clinician.  Cerebral Palsy Research Network Chief Executive Officer, Paul Gross, will demonstrate the range of capabilities of and benefits from engaging in research through MyCP.  MyCP is a personalized, secure web platform for collaboration and contribution to research about the lived experience of having CP or caring for someone with CP.  The webinar is scheduled for Wednesday, March 29, at 8 pm ET via Zoom.

The primary way that MyCP allows community members to participate in research is through surveys hosted in a well-established academic research survey platform called REDCap.  Before community members can access surveys, we go through an informed consent process.  We will discuss the key areas of consent and the privacy and security of data to enable your participation in research.  Members of the research community will benefit from learning about how consumers participate in our research environment and how community members are informed of available studies.

MyCP includes personalized web resources, access to our award winning toolkit and other resources, and a private discussion forum.  The discussion forum provides a private and optionally anonymous platform for community members to interact with the physicians in our network to discuss research priorities, evidence-based treatments and to share important lived experiences.  The webinar will review how community members and clinicians can connect to improve outcomes for people with CP.

Please register and join us for this presentation and discussion so you can learn how MyCP can help you contribute to the conversation and the action to optimize the lifelong health and wellbeing of people with CP.  The webinar will also be recorded and posted to our website and YouTube.

Thanks to Drew Beamer and Unsplash for this shot of a crystal ball in an extended hand with a view of the horizon

Stellar Year – Even Brighter Future

Dr. Ed Hurvitz, holds a mic while speaking to CPRN investigators seated classroom style at our Chicago meeting

Forty clinician investigators, community members and advocates gathered in Chicago in May 2022 to advance the research of the network.

The year 2022 was stellar for the Cerebral Palsy Research Network on several fronts — the creation of numerous new studies and funding to support existing studies, such as one focused on adult wellbeing and pain. We have had invaluable engagement with the community through our 11 webinars and our in-person research meeting in May. Additionally, we have implemented measurable standardization of care at 12 of our hospital centers through our quality improvement (QI) program. Finally, our partnership with the National Center for Health, Physical Activity and Disability has brought wellness programming to the CP community, and our new partnership with the University of Pittsburgh has begun providing us with data coordinating services.

The change in our business model that we set in 2021 has blossomed into a critical funding source that will sustain our future research enterprise and strengthen our team and infrastructure. Our research sites are supporting the network not only by volunteering their time to contribute to the CP registry and our quality improvement processes, but also by paying a participation fee to support the personnel and other resources necessary to run a high quality research network. These fees have allowed us to hire Dr. Kristie Bjornson as our scientific director and Dr. Amy Bailes to lead our QI efforts. In addition, we have been able to retain a consulting firm that specializes in data collection embedded in the electronic medical record which is a unique aspect to our registry and care improvement model.

A colored bar graph shows sites in the CP Research Network and the number of patients they have enrolled in the CP registry.

Our CP Research Network’s clinical registry has grown enrollments by more than 50% in the past year.

Our research efforts are already seeing the benefits of these investments where our May in-person investigator meeting facilitated the creation of six new research studies for the network to advance in parallel with our nine existing studies. Our existing studies have generated six new manuscripts three of which were published in 2022 and more are coming for 2023. Registries grew to 7,500 patients in our clinical registry (up 50% from the prior year) and 2,058 in our Community Registry (up 41%). These registries are now amongst the largest CP registries in the world. Our genetics study is entering its fifth year and on track to enroll its target of 500 patient parent trios and will reveal many previously unknown factors in the cause of CP. That knowledge will in turn let us begin to personalize treatment in the future.

Our quality improvement efforts are aimed at advancing the quality of care for CP now. We have four active efforts that are showing sustained improvement at multiple centers for the assessment of pain in adults, the consistent diagnosis of dystonia in CP and the surveillance of hips, the top cause of pain in individuals with CP. We have increased the assessment of pain in adults from a baseline of 24% to more than 90% of the visits. Similarly, we have increased the consistency of dystonia diagnosis from a baseline of 42% to just shy of 60%. For hip surveillance, we have examined the consistency of hip surveillance at CPRN centers and we are now using our registry to help identify the patients that need frequent hip surveillance. These care efforts are being spread to additional centers and being written up as manuscripts for publication enabling the CP Research Network to influence the treatment of CP worldwide.

Our wellness programs are focused on keeping people with CP physically active because evidence shows us the importance of exercise for health of people with disabilities. The MENTOR program to which we educate and recruit adults in the CP community has been very positively received by the people who have participated.


Many times over the past few weeks, I have recognized the timeliness of MENTOR for me, given my life stage, CP journey, and the added impact posed by my other health conditions. The MENTOR program helps me see how to manage all of that by building/reinforcing skills around what I can control (e.g., mindset, level of activity, and nutrition). At the same time, the one-on-one opportunities to meet with staff have helped me refine my approach.
Marji – MENTOR graduate

While we are excited by what we have accomplished in 2022, we are anticipating an even more impactful 2023. We have a big announcement planned for the coming weeks which will further expand and accelerate our research and education efforts. We are already on track to submit six to eight new grants and publish several more manuscripts. We hope to complete recruitment for our adult study of wellbeing and pain while continuing to follow adult these participants over the long term to increase knowledge about aging with CP. We are planning to release three new toolkits to strengthen our educational offerings. And we hope improve wellbeing in the community with more fitness offerings.

Stay well, stay tuned and thanks for all of your support and engagement in our work!

Grip Study Results: MyCP Webinar

The hand of a man, wearing a grey suit, grasping a grip strength measurement device.

The hand of a man, wearing a grey suit, grasping a grip strength measurement device.

On Monday, June 20 at 8 pm ET, Ed Hurvitz, MD, will present the preliminary findings of his study of grip strength as biomarker for body composition in cerebral palsy (CP). This presentation will appeal to all adults with CP and parents/caregivers alike because of the importance of understanding the role of body composition to lifelong health in CP and risks it may present to members of our community. Dr. Hurvitz is the chair of Physical Medicine and Rehabilitation at the University of Michigan and a leading researcher into challenges that people with CP face as they age.

Dr. Hurvitz, with a close cropped beard, salt and pepper hair, wearing a dark suit, white shirt, blue tie and rimless glasses

Dr. Ed Hurvitz will present the findings from his pilot study on Grip Strength

Dr. Hurvitz was the subject of last week’s CP Stories blog post that spotlights members of the extended CP community for their role in championing research either as a passionate adult with CP or caregiver or as a clinician/researcher committed to improving health outcomes for people with CP. He leads a group of researchers at the University of Michigan that study a number of health and fitness related outcomes for adults with CP. He is also a member of the CP Research Steering Committee and chairs its Adult Study Group.

The Grip Study pilot received funding from the Foundation of Physical Medicine and Rehabilitation in October 2020. In Monday’s MyCP webinar, Dr. Hurvitz will present that rationale for the study, the findings from the pilot study conducted at the University of Michigan and his plans to expand the study within the CP Research Network to validate its findings in a multi-center context. The presentation will be followed by an open Q&A. People interested in watching the webinar can sign-up on the MyCP Webinar Series page to receive the webinar link. If you have registered for the MyCP webinar series, there is no need to register again. The link will be emailed to you prior to the start of the webinar. Join us!

A middle aged woman with spastic quadriplegia smiles with blue eyes, strawberry blond hair and a black sweater.

CP Stories: Susan Picerno

Susan Picerno, a woman in her middle age with spastic quadriplegia, has led a few different professional lives. She has thrived in all of them. But the beginning of her career entailed the hiccups that driven, ambitious people with cerebral palsy come to expect. After graduating summa cum laude with a bachelor’s degree in social work, she decided to continue onto graduate school, obtaining a master’s in social work from the prestigious University of Michigan. Despite a graduate degree from what was the best social work program in the country, Susan recalls interviewing for twenty-two different positions before receiving an offer. For one interview, Susan recalled walking in with her crutches and being met with incredulity: “The director was so flabbergasted that I was disabled that he just stared at me, speechless. He had two directors with him, and they had to conduct the interview. He didn’t say a word the entire time,” said Susan.
She finally landed a part-time role with United Cerebral Palsy in Buffalo, New York, volunteering at a nearby center for independent living at the same time. From her volunteering, she became a board member, then an employee, and eventually, Director of Services. This was in the late ‘80s, not long before the passage of the Americans with Disabilities Act of 1990. The independent living movement was still relatively new at the time, and so Susan felt like her and colleagues at other, nearby centers for independent living were part of a movement that was growing and changing in real-time.

After her time at the center for independent living, Susan transitioned back into social work management for a while, pivoting again into grant writing for a time. At age 41, she shifted again, this time moving to D.C. to dedicate herself exclusively to federal disability policy. Susan had been working on disability issues for most of her career, but tackling the problem head-on at the federal level felt both meaningful and fulfilling.

But as Susan continued to advance and take on new challenges in her professional life, she could feel her spastic quadriplegia getting the best of her. She started developing secondary health issues common for people with cerebral palsy: obesity, type II diabetes, and hypertension. “I tried to exercise but I found physical therapy to be unsupportive,” Susan said. “I was supposed to exercise at home on my own, without the ability to stretch my own muscles and no adaptive exercise equipment or support from other people with disabilities. Why do physical therapists think that this situation will result in success?”

This is to say that for people with cerebral palsy who want to develop an exercise routine, the barriers to entry can be quite high. Pair these logistical difficulties with her harrowing experiences as a child in physical therapy—she describes being worked so hard by her abusive physical therapist that her lungs collapsed multiple times—and it’s clear that developing a regimen can present not only physical difficulties, but emotional ones. “Looking back [at my time in PT], I wonder: couldn’t they have put me in elbow pads, kneepads, etc. so that I didn’t injure myself?”

Despite these early experiences, Susan realized she was at a crossroads. Knowing what needed to be done but not sure how to make it work, Susan turned to the Lakeshore Foundation’s MENTOR program, which she was introduced to through her participation in the CP Research Network. The MENTOR program, which the CP Research Network is responsible for promoting to the CP community, helps develop wellness activities that participants can practice at home. Susan had a rocky start to the program—it was hard not to be discouraged about exercise, given her past with it—but eventually, the program became less about past struggles and more about self-improvement. Likewise, the ability to connect with other CP Research Network members who’d faced similar challenges was immensely rewarding. “These folks will always be my friends,” said Susan. She has since gone on to participate in another activity organized by the MENTOR creators, called the M2M study, which was a free exercise program tailored to people with disabilities.

Exercise was once a source of anxiety and disappointment for Susan, but now it’s a central part of her life. She consistently works out through her local adaptive fitness program, DPI Adaptive Fitness, which offers both in-person and virtual programming. One of the joys of virtual programming is the ability to participate in workout sessions that are “based” anywhere: one of Susan’s favorites is through the Bay Area Outreach and Recreation Program (BORP), which is based in San Francisco. “I work out about six hours a week now, and that includes boxing class, weight training, cardio. All kinds of activities.”

Susan recently retired from nearly two decades of service for the federal government, almost all of which were spent working for the U.S. Department of Labor’s Office of Disability Employment Policy. But in more ways than one, she continues to work to advance the causes of people with cerebral palsy. Advances in the fields of genetics and neurology represent possible breakthroughs for disability communities, but if used unwisely, these same technologies could greatly reduce the diverse ways in which human brains function (also known as “neurodiversity”). Thanks in part to the connections she has made through the CP Research Network, Susan has continued to organize and educate about this topic, engaging with both activists and scientists alike: “As people with cerebral palsy, we need to step forward and speak decisively for our own community,” Susan said. “And we need to educate parents, medical professionals, and the general public about our disabilities.” Likewise, she also recently started Little Tiger Productions, a platform that seeks to amplify creative work by and about people with disabilities. “There are so few stories that are written with disabled people in mind. Characters that do have disabilities often exist to make a point,” she said. Tiger Talk, a Substack newsletter dedicated to just this topic, is set to publish soon.