--- title: Dr Charles Steward elected to the ICPGC GC description: Congenica’s Patient Advocacy and Engagement lead, Dr Charles Steward, has joined the International Cerebral Palsy Genome Consortium Governance Council. image: https://blog.congenica.com/hubfs/Charlie%20and%20family%20.png --- - [Our Customers and Partners](http://www.congenica.com/our-customers) - [Our Product Portfolio](http://www.congenica.com/congenica-products) - **Inherited Diseases** - [Rare Disease](http://www.congenica.com/congenica-rare-disease) - [Inherited Cancer](http://www.congenica.com/congenica-inherited-cancer) - [Prenatal Health](http://www.congenica.com/congenica-prenatal) - [Carrier Screening](http://www.congenica.com/congenica-carrier-screening) - [Neurodevelopmental Disorders](http://www.congenica.com/congenica-neuro) - **Somatic Oncology** - [Solid Tumours](http://www.congenica.com/congenica-oncology) - **Pathogen** - [Pathogen Surveillance](http://www.congenica.com/congenica-pathogen-surveillance) - [Our Services](http://www.congenica.com/congenica-services) - [Clinical Interpretation Services](http://www.congenica.com/congenica-clinical-interpretation-services) - [Professional Services](http://www.congenica.com/professional-services) - [Customer Support](http://www.congenica.com/customer-support) - [Pharma Services](http://www.congenica.com/pharma-services) - Resources - [Publications](http://www.congenica.com/publications) - [Supporting materials](http://www.congenica.com/resources) - [News](https://blog.congenica.com/) - [Events and webinars](http://www.congenica.com/events-webinars) - [About us](http://www.congenica.com) - [Leadership Team](http://www.congenica.com/leadership) - [Quality](http://www.congenica.com/quality) - [Investors](http://www.congenica.com/investors) - [People and Vacancies](http://www.congenica.com/people) - [Contact us](http://www.congenica.com/contact) Login ##### Please select your location and reference genome: [America - GRCh37](https://us-37.congenica.com/) [America - GRCh38](https://us-38.congenica.com/) [Europe, Middle East, Africa - GRCh37](https://eu-37.congenica.com/) [Europe, Middle East, Africa - GRCh38](https://eu-38.congenica.com/) [Overview](https://blog.congenica.com) [Dr Charles Steward elected to the ICPGC GC](https://blog.congenica.com/dr-charles-steward-elected-to-the-international-cerebral-palsy-genome-consortium-governance-council-icpgc-gc) ![Dr Charles Steward elected to the ICPGC GC](https://blog.congenica.com/hubfs/Charlie%20and%20family%20.png) Blog Patient Advocacy cerebral palsy # Dr Charles Steward elected to the ICPGC GC 5/11/2021    |    0 min read ### Congenica’s Patient Advocacy and Engagement lead, Dr Charles Steward, has been elected to the International Cerebral Palsy Genome Consortium Governance Council (ICPGC GC).   Dr Steward said of his appointment: “I am genuinely thrilled to be able to join the ICPGC GC and work alongside this fantastic group of scientists and clinicians who are looking into the human genome for answers to why cerebral palsy (CP) occurs. "CP is still considered by many people to be a result of an "accident" at birth, but we now know there are genetic drivers behind many cases. However, unlike, for example, cancer and heart disease, very little effort is being spent on CP, despite it being the most common physical disability in childhood. At least 1 in 4 children with CP have an underlying rare genetic disease cause, which means there is an enormous potential for genomics to support the early diagnosis and treatments for people with CP. ![Add a little bit of body text](https://blog.congenica.com/hs-fs/hubfs/Canva%20images/Add%20a%20little%20bit%20of%20body%20text.png?width=2240&name=Add%20a%20little%20bit%20of%20body%20text.png)   “As well as being a genome scientist, I am a patient advocate and the father of two young children with severe CP, neither of whom can stand and have limited or no speech. I hope I can bring the much-needed parent and patient advocate perspective to the GC team and to help keep the ICPGC community aligned with their goals. I am a passionate patient advocate and believe that the voice of the patient is hugely powerful in driving research and ultimately precision medicine”.   Professor Jozef Gecz, PhD, FAA, FAHMS, FFSc(RCPA), Chair ICPGC, said: "We are truly excited and privileged to welcome Charlie to the ICPGC Governing Council. Charlie is a well-recognized and respected professional in human genomics, parent of children with CP and a dynamo with bottomless enthusiasm, motivation and energy to help those less fortunate. We all at ICPGC are very much looking forward to work with Charlie to make a difference."   ## Cerebral Palsy – the facts Like the cumulatively common rare diseases, CP is an enormous cause of global disability and is a huge economic burden to both families affected and healthcare providers. It is a lifelong condition, and the physical disability increases with age. CP impacts around 17 million people worldwide and the facts speak for themselves: - 1 in 2 children with CP have intellectual disability - 1 in 3 cannot walk - 1 in 4 cannot talk - 1 in 4 has epilepsy - 1 in 4 has a behavior disorder - 1 in 10 is blind - 1 in 25 is deaf - 3 in 4 have chronic pain ![Charlie and family ](https://blog.congenica.com/hs-fs/hubfs/Charlie%20and%20family%20.png?width=2048&name=Charlie%20and%20family%20.png)Charlie with his family   ## The ICPGC The [ICPGC](https://icpgc.org/) was formed in 2017 at the first meeting in Adelaide, South Australia and now has representation from at least ten different countries. The ICPGC aims to achieve its goal ‘to work as an integrated, collaborative international network of clinicians, researchers, and advocates in order to unlock the molecular basis of cerebral palsy using genomics and related tools, and to facilitate the development of novel therapies to improve the health and quality of life of individuals with cerebral palsy’, by advancing a common infrastructure of genomics and clinical data, and harmonizing approaches to enable effective and responsible sharing of genomics.   ## Patient Advocacy and Engagement at Congenica A desire to improve the lives of people living with rare and inherited diseases is central to everything we do at Congenica, and our patient advocacy and engagement initiative aims to ensure the patient voice is heard loud and clear inside the company. [![Find out about Patient Advocacy at Congenica](https://no-cache.hubspot.com/cta/default/6863388/3521a474-e725-46e8-84cf-a9e423b85d07.png)](https://cta-redirect.hubspot.com/cta/redirect/6863388/3521a474-e725-46e8-84cf-a9e423b85d07)   Reference Novak, I. et al. Clinical prognostic messages from a systematic review on cerebral palsy. Pediatrics 130, e1285-1312 (2012) --- ### Related articles ![The Road to Diagnosis: How Genetics Transforms the Lives of Rare Disease Patients](https://blog.congenica.com/hs-fs/hubfs/Untitled%20design%20(8).png?width=320&height=192&name=Untitled%20design%20(8).png) 2/24/2023 #### [The Road to Diagnosis: How Genetics Transforms the Lives of Rare Disease Patients](https://blog.congenica.com/the-road-to-diagnosis-how-genetics-transforms-the-lives-of-rare-disease-patients) In recognition of Rare Disease Day, Congenica looks at the importance of a genetic diagnosis for patients and asks, what's next for rare disease? ![What’s it like to be a woman working in science?](https://blog.congenica.com/hs-fs/hubfs/Since%202016%2c%20the%20number%20of%20women%20working%20in%20STEM%20fields%20in%20the%20UK%20has%20increased%20by%20216%2c552%2c%20taking%20the%20total%20number%20over%20the%201%20million%20mark%20for%20the%20first%20time.%20Women%20now%20make%20up%2024%25%20of%20the%20STEM%20workforce%20i%20(2).png?width=320&height=192&name=Since%202016%2c%20the%20number%20of%20women%20working%20in%20STEM%20fields%20in%20the%20UK%20has%20increased%20by%20216%2c552%2c%20taking%20the%20total%20number%20over%20the%201%20million%20mark%20for%20the%20first%20time.%20Women%20now%20make%20up%2024%25%20of%20the%20STEM%20workforce%20i%20(2).png) 2/10/2023 #### [What’s it like to be a woman working in science?](https://blog.congenica.com/whats-it-like-to-be-a-woman-working-in-science) For International Day of Women and Girls in Science, we talk to three women at Congenica about their experiences of working in STEM. ![Professor Matthew Hurles discusses the Deciphering Developmental Disorders study](https://blog.congenica.com/hs-fs/hubfs/Deciphering%20Developmental%20Disorders%20(1)-1.png?width=320&height=192&name=Deciphering%20Developmental%20Disorders%20(1)-1.png) 2/8/2023 #### [Professor Matthew Hurles discusses the Deciphering Developmental Disorders study](https://blog.congenica.com/professor-matthew-hurles-discusses-the-deciphering-developmental-disorders-study) Professor Matthew Hurles, project lead for DDD study and Congenica founder, discsuses his projects, advancements in data analysis and interpretation ##### Congenica is available as a CE Marked IVD clinical decision support platform for clinical diagnostic use for inherited genetic disorders in the UK and EU, Iceland, Lichtenstein, Norway, Switzerland and Turkey. 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