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CP Stories: “I want Hudson to pursue all his dreams.”

Hudson Birkin was diagnosed with cerebral palsy at the age of four. Today his mother, Suzanne, 51, talks about her fight to advocate for the care her son needs…  

Eight year-old Hudson

When it comes to raising her eight-year-old son with cerebral palsy, devoted mother, Suzanne Birkin finds it best to take one day at a time.  

“It’s hard to think way into the future for Hudson,” says Suzanne, who lives with her son and husband, Carl, in Coventry in the United Kingdom. “We primarily concentrate on challenges as they arise and make sure he is happy and feels like a valued member of his community.” 

The little boy who loves to draw and build blocks was first diagnosed in 2016 when he was four-years-old after his parents noticed he was not reaching developmental milestones as a baby and toddler.  

In addition to CP Hudson also has a speech disorder. Since his diagnosis, he has undergone physical therapy, occupational therapy, speech therapy, and neurology consultations, all through the UK’s free National Health Service (NHS). This care has helped Hudson progress to taking independent steps while wearing splints and using a walker, but his family is unsure whether the NHS can adequately support his long-term needs.  

“We are lucky to get our medical needs covered by the NHS, but the help is limited,” explains Suzanne. “When Hudson got to the point where he was walking independently, his therapy was scaled back to once a year to review his progress. It’s frustrating. It feels like the NHS gets you to the bare minimum, and then they let you go. Hudson can only walk about 20 steps on his own! I’ve learned that you have to shout and complain to get more from the NHS. It works sometimes, but other times they just can’t provide.” 

Determined for their son to reach his full potential, Suzanne and Carl pay for their son to have private physical therapy consultations twice a year and private music therapy classes that help with his speech.  

Five days a week, Hudson attends Sherbourne Fields School, an all-age school for students with a broad spectrum of needs, including physical disabilities, medical conditions, and learning needs. The school facilities include a swimming pool, multi-sensory room, soft play area, and a strength and conditioning gym. 

“It is a fantastic school,” Suzanne says. “Hudson loves the routine and enjoys the social aspect of being with his classmates.” 

Suzanne, a dance teacher with three grown-up step-children in addition to Hudson, relies on family and friends and self-care to get through the challenging moments. 

“Yoga and concentrating on my breathing help me,” she says. “Escaping in my work helps too, and I have very supportive friends. I have a group of mommy friends whose children all have special needs. They just get it and understand the ups and downs.” 

As she supports Hudson through his CP challenges, Suzanne is thankful to be part of the CP Research Network and the opportunity to participate in research to help advance knowledge of Hudson’s condition. The family has already contributed to a speech research project via the network. 

“It was gratifying to see multiple-choice questions that reflected Hudson’s development,” she says of the experience. “Usually, I have to tick “other” because an appropriate answer isn’t on there. I felt validated and listened to. I’m happy to participate in anything that can bring more awareness to CP.” 

Right now, she is enjoying seeing Hudson grow and find his way. 

“Hudson is a quiet boy when you first meet him but opens up the more comfortable he gets,” she smiles. “He is interested in geography and loves to go on Google maps and look up his neighborhood and where his grandparents live in the U.S. He can navigate very well from Philadelphia, to where we live, to where his aunt lives in the south of England. He’s good at getting around! He is still working out what he wants to be when he grows up and sometimes says he wants to be a dance teacher like his mom or help people like his dad, who cares for adults with learning disabilities. I hope he has every opportunity to pursue any dream he wants to.” 

Don’t miss our 2021 MyCP Webinar Series!

Last year, more than 1,000 people logged on for our MyCP webinar series as we came together as a community to discuss cerebral palsy (CP) research. We are thrilled to announce our webinar series will return in 2021 with our first installment, Research CP: Dystonia Edition Results, scheduled for Tuesday, February 9, at 8 p.m. EST. 

Research CP embodies our efforts to engage stakeholders — community members, advocates, clinician and researchers — to set a research agenda that matters to the community.  It began in 2017 with our inaugural effort to establish the top research questions valued by the community. The result was published in Developmental Medicine and Child Neurology in 2018 and has set the research agenda for the CP Research Network.  In 2019, we launched Research CP: Dystonia Edition. We engaged more 160 people in educational webinars on the topic, community members and clinicians generated a prioritized list of unanswered questions about dystonia in CP

The Research CP: Dystonia Edition Results webinar is the summary of our findings from this initiative to set a patient-centered research agenda for dystonia in CP. It will be presented by CP Research Network Chief Executive Officer Paul Gross, Bhooma Aravamuthan, MD, DPhil, a pediatric neurologist from St. Louis Children’s Hospital in Missouri, Darcy Fehlings, MD, a developmental pediatrician from Holland Bloorview Rehabilitation Hospital in Toronto, Ontario, Canada and Michael Kruer, MD, a pediatric neurologist and neurogeneticist from Phoenix Children’s Hospital in Arizona.

To find out more, please visit our MyCP Webinar Series page and follow the instructions to sign up and secure your Zoom link to the online event. Webinars will also be recorded for later viewing.

Throughout 2021, we will bring you eleven monthly webinars featuring principal investigators from the CP Research Network, sharing concepts, development, and goals from their network research.  We will cover a broad spectrum of CP research ranging from genetics to care of adults with CP. The webinars are available for free to all CPRN community members and clinicians.

We encourage all who have participated in this important ongoing process to attend. We hope to see you there!

Cerebral Palsy Research Network Merges with CP NOW

We are excited to announce the Cerebral Palsy Research Network (CPRN) has merged with CP NOW, a nonprofit organization for parents and caregivers based in Greenville, South Carolina. 

michele shusterman and paul gross of the CP Research Network
Michele Shusterman and Paul Gross at AACPDM Austin (2015)

Merging CPRN and CP NOW is a natural extension of the longstanding strategic partnership between the two organizations. Previously, CP NOW President and Founder Michele Shusterman has worked as the director of community engagement for CPRN. In turn, CPRN Founder Paul Gross has served as a business advisor to CP NOW. 

Over the last five years, our organizations have collaborated on setting a patient-centered research agenda for cerebral palsy called Research CP, launching the MyCP platform and funding new research to address priorities from the Research CP agenda.  The new organization will conduct its nonprofit business under the name the “Cerebral Palsy Research Network” or “CP Research Network” for short. 

“It is exciting to plan the synergies of merging our two organizations,” said Gross.  “CP NOW has deep connections in the CP community and has produced award-winning education information for families.” 

The CP Research Network will benefit from the combination of community relationships with a large network of hospitals and clinicians engaged in advancing health outcomes for people with CP.

Logistically, Gross will lead the new organization as President and Chief Executive Officer and Shusterman will continue as a director on the board while advancing the education and wellbeing programs.  Jacob Kean, PhD, an associate professor at the University of Utah, will continue to lead the network’s data center and cerebral palsy registry efforts and join the board of directors.

The CP Research Network’s digital platform, cprn.org, will include the blog CP Daily Living, CP NOW’s award-winning CP Toolkit and Wellness Guide, and MyCP, a web property for the CPRN Community Registry and Forum. This digital resource will provide a single place for the CP community and clinician researchers to come together to advance health outcomes for people with CP and facilitate deeper community stakeholder engagement in research.

Many of these changes will be rolled out incrementally over the coming weeks, starting with some of our social media platforms.  Our website, which brings together all of the information from our four web properties, will be the keystone supporting our mission.

We hope you will join us in celebrating this pivotal moment for our two organizations. Together, as one entity, we will add a strong community voice to our research, educational, and wellbeing efforts.