Action Cerebral Palsy

Communication Matters AAC Exhibition Day 2023 - Communication Matters

For parents, carers and professionals interested in Augmentative and Alternative Communication (AAC) products and services, there is a one day exhibition coming up in Leeds next month on 24th March. For more: https://www.communicationmatters.org.uk/news/aac-exhibition-day-2023-savethedate/
Communication Matters

Communication Matters AAC Exhibition Day 2023 - Communication Matters Friday 24th March 2023 10:00-15:00 Parkinson Building, Woodhouse Lane, University of Leeds, LS2 9JT Communication Matters is pleased to announce the opportunity to meet in person suppliers of Augmentative and Alternative Communication (AAC) products and related services. The world of AAC is constant...

Please help our amazing Daniel - to reach his target. https://www.gofundme.com/f/help-children-and-families-with-cerebral-palsy?qid=c9be1230d254d3150e07993ba63f7773 He has now completed his Fan Dance challenge - 14 tough miles over very rough Breacon Becon terrain in the freezing rain, icy water and mud. Well done, Daniel! You are an inspiration, and thank you. Looking forward to finding out what your next challenge for will be!

Are you a parent/carer or professional working with children aged 5 - 15 with CP and/or uses a frame? Have a look at these brilliant Saturday indoor football sessions being held in Sheffield from January.

Good luck to our fundraiser Daniel Rothwell who is going to attempt to break the Fan Dance course record on Sunday. 15 miles over the biggest hill in the Brecon Beacons. We wish you all the best. Thank you for choosing to help children and families with CP. https://www.gofundme.com/f/help-children-and-families-with-cerebral-palsy?qid=c9be1230d254d3150e07993ba63f7773

Our thanks to Lancashire County Council Early Years Specialist Teaching Service for inviting Action CP to lead an INSET training session yesterday about cerebral palsy and its impact on children with the condition and how they are able to interpret the world around them. We are also very pleased for your positive feedback on the morning. Action CP welcomes the opportunity to support local councils to improve their CP Awareness. Please do get in touch if we can help.

Award Categories

Nominations are now open for the Communication Matters Augmentative and Alternative Communication (AAC) Awards 2023. There are 10 categories recognising achievement and contributions to AAC. Nominations close on 31st January and the winners will be announced on 24th March. If there is someone in your community whose work or achievement should be shared and recognised, please do nominate them. For more: https://eu.eventscloud.com/website/9067/categories/

Award Categories The ceremony will feature the usual eight awards, plus two new categories this year, reflecting the diversity of the Augmentative & Alternative Communication (AAC) community, so we hope you might consider potential nominees for each of the categories and then nominate them below. Here they are!

Help children and families with cerebral palsy, organized by Daniel Rothwell

We would like to thank Daniel Rothwell for helping to get our 2023 off to a wonderful start. Daniel is an NHS Clinical Scientist and ultrarunner who has decided to raise funds for us by undertaking a series of challenges this year. His first is this coming Saturday, 14th January when he's going to try to break the fastest known course time on the Fan Dance (so, he wants to run 15 very rugged, hilly miles in less than 1:57:49!). Please help Daniel to support us: https://www.gofundme.com/f/help-children-and-families-with-cerebral-palsy?qid=c9be1230d254d3150e07993ba63f7773. And if you would like to challenge yourself in 2023 and would like to fundraise for Action CP, please send us a message!

Help children and families with cerebral palsy, organized by Daniel Rothwell Do you want to join me in making a difference? I'm raising money in ai… Daniel Rothwell needs your support for Help children and families with cerebral palsy

Wishing all our friends and families a peaceful, joyous and happy holiday. You have helped us to shine a light on the challenges facing children and young people with cerebral palsy in the UK in 2022.

We are indebted to the contributions of so many who shared and responded with feedback to our awareness campaign and to our online surveys, with evidence for the APPG on CP, and with openness to CP awareness training. Thank you for taking up the baton with us!

All-Party Parliamentary Group on Cerebral Palsy - Connect

This year, the APPG on CP has been examining the transition to adulthood and what the national picture is on social inclusion for children and young people with cerebral palsy. As co-sponsors, we would like to thank the Group Co-Chairs, Mary Foy MP and Paul Maynard MP, all of the officers, our co-sponsor, Caudwell Children, the APPG Secretariat, and all those who have provided written or spoken evidence of their lived experience for their time, passion and compassion. Please read the reports and work with us to ensure that all those with CP have access to high-quality services and support to enable them to fully participate in our wider society. https://connectpa.co.uk/appg-cerebral-palsy/.

All-Party Parliamentary Group on Cerebral Palsy - Connect The All Party Parliamentary Water Group brings together Parliamentarians and stakeholders from across the UK water sector to discuss the issues impacting the sector.

We are hugely grateful for the contributions and collaboration in 2022 of so many leading paediatricians and paediatric neurologists, healthcare professionals, physiotherapists, occupational therapists, Conductors, educational professionals and professional bodies (Institute of Health Visiting and pdNet) as well as our CP colleagues at Scope , UP - The Adult Cerebral Palsy Movement, CP Teens UK , - Centre for Movement Disorders and the CE Consortium.

As we reflect on 2022, we would like to thank all of our incredible fundraisers this year, including: Eammon, Gemma Roath , Angus, Rory, Finn, Will, Yvonne Asamoah-Tawiah , Tobias Colton Wealth Management , Ted, Grace Grimsdale and James. Whether this spurs you on to tackle even greater challenges or get more involved with Action CP, we would like to celebrate your achievements this past year. Thank you!

We were delighted to join the 10th Anniversary celebration for Institute of Health Visiting. Health visitors are a vital safety net for newborns and young children and their families. We are grateful for their help and support in developing our awareness campaign about the early warning signs of cerebral palsy.

iHV is delighted to launch this new film 'Health visiting in your community' which captures how support families through the unexpected twists and turns of early parenthood. Parenting is hard and nothing completely prepares you for it.
https://bit.ly/3iMKEkA

Random Acts - Whose Voice Is It Anyway

“Whose Voice Is It Anyway” a mockumentary from Channel 4 Random Acts was written and directed by Kate who has lived experience of athetoid cp. It challenges perceptions of people with athetoid Cerebral Palsy and highlights dilemmas of communication https://channel4.com/programmes/random-acts/on-demand/73973-001

Random Acts - Whose Voice Is It Anyway A striking modern fable of two women, disability, personal freedom and power

Are you a parent of a young child under 7 with SEND who uses mobile devices at home? Could you spare 10 minutes to complete a questionnaire to support research into the use of these devices? Please contact Yanus, below.

Theodore's fund for Action Cerebral Palsy, organized by Theodore Barnard-Edwards

We are so lucky to have some truly great friends, like Ted Barnard-Edwards, who decided to blend his passion for gaming with his desire to help others like him with cerebral palsy. Ted recently undertook a 12-hour marathon live streaming session of gaming and smashed his target and raised £750 for Action Cerebral Palsy. A huge thank you to Ted and all of those who chose to support him! https://www.gofundme.com/f/3mnfy-action-cerebral-palsy?qid=78480f2b5620f1140785572e25aaf0a2

Theodore's fund for Action Cerebral Palsy, organized by Theodore Barnard-Edwards Hi, my name is Ted; I'm 22, and I was hoping you would join me in … Theodore Barnard-Edwards needs your support for Theodore's fund for Action Cerebral Palsy

Thank you to Grace Grimsdale and James Lee Grimsdale for your incredible support. Instead of asking for gifts on your wedding day, you chose to give to others! You and your guests raised £2,703 for Action Cerebral Palsy, in honour of Grace's Uncle Ivan who had CP. We are so humbled by your generosity and wish you all the best in your new life together.

So frustrated and angry for Alf and his girlfriend, and so much for social inclusion, then. What a perfect starting point for next week's All Party Parliamentary Group on Cerebral Palsy meeting on Social Participation for Children and Young People with Cerebral Palsy. See the terms of reference herehttps://connectpa.co.uk/wp-content/uploads/2022/09/APPG-on-Cerebral-Palsy-Terms-of-Reference-Social-Participation-for-Children-and-Young-People-with-Cerebral-Palsy.pdf

Kidz to Adultz North - Free Event Organised by Disabled Living

Just wanted to share that Kidz to Adultz North is happening next week in Manchester with 180+ exhibitors offering advice and information for parents, carers, children and young people with disabilities and additional needs. It is free to register. https://www.kidzexhibitions.co.uk/kidz-north/

Kidz to Adultz North - Free Event Organised by Disabled Living FREE UK exhibitions - Kidz to Adultz North - dedicated to children and young adults up to 25 years with disabilities and additional needs.

Faith by Yvonne Asamoah-Tawiah

Delighted to attend the launch of the amazing Yvonne Asamaoh-Tawiah's Faith Album on Saturday, and we are very grateful for the £300.00 raised at the event in aid of Action Cerebral Palsy.
album. https://album.link/FAITH

Faith by Yvonne Asamoah-Tawiah Listen now on your favorite streaming service. Powered by Songlink/Odesli, an on-demand, customizable smart link service to help you share songs, albums, podcasts and more.

Are you a parent of a child with CP who uses a wheelchair? Could you help with this research?

Movement is vital for a child’s development, and a problem with movement may prevent healthy development and could affect normal play and learning. has created a free parent information leaflet about movement for healthy development from birth to 3 years. For more, please see www.actioncp.org/signs.

All-Party Parliamentary Group on Cerebral Palsy - Connect

www.actioncp.org is proud to co-sponsor the meeting this pm with focus on social participation for children with cerebral palsy. Thanks to speakers , Electra Fence and Dido Greene for your insights and to everyone who attended. This is a clearly a topic that needs further attention - in Electra's words; "what is needed is education, access and respect". For more information see https://connectpa.co.uk/appg-cerebral-palsy/

All-Party Parliamentary Group on Cerebral Palsy - Connect The All Party Parliamentary Water Group brings together Parliamentarians and stakeholders from across the UK water sector to discuss the issues impacting the sector.

Action Cerebral Palsy | Signs

We are delighted that clinical colleagues are using our awareness campaign materials to educate others in the signs of atypical motor development. We hope this will result in more infants being referred earlier for vital early intervention. Our If In Doubt, Check It Out poster and parent information leaflet are freely available to download from our website: www.actioncp.org/signs Thank you Lisa Chastell, Children's Physiotherapist with Hertfordshre Community NHS Trust, who chose to incorporate this into her presentation about supporting early intervention at yesterday’s Early Years SEND Health Conference.

Action Cerebral Palsy | Signs What are the warning signs of cerebral palsy?

Action Cerebral Palsy updated their website address.

Action Cerebral Palsy updated their website address.

connectpa.co.uk

As draws to its close, salutes all those living with cerebral palsy across the world and all those who work with them. Today we are delighted to see the release of the APPG Report, Growing Up: the transition from childhood to adulthood https://bit.ly/3CddO2f sponsored by Action Cerebral Palsy and . We urge everyone who cares about young people with cerebral palsy to support the Report's 10 point plan and to share this with their MP. Sharable link ➡️ https://bit.ly/3M9cTVb. Heartfelt thanks to , , Mike Indian, Connect PA and most importantly, everyone who provided such compelling evidence for the report.

connectpa.co.uk

To mark , is launching an awareness campaign to give new parents the confidence to speak to their GP or Health Visitor if they have any concerns about their young child’s motor development. We would like to thank the leading healthcare professionals, clinicians, therapists and parents for their expert advice and our funders. We are very proud that our poster and parent information leaflet have both received the accreditation of Institute of Health Visiting www.actioncp.org/signs. , , , .

Are you a young person with cerebral palsy or do you support children and young people with cp? Please support the All Party Parliamentary Group on Cerebral Palsy with their work on Social Participation for Children and Young People with Cerebral Palsy by providing evidence for the forthcoming sessions. See the terms of reference herehttps://connectpa.co.uk/wp-content/uploads/2022/09/APPG-on-Cerebral-Palsy-Terms-of-Reference-Social-Participation-for-Children-and-Young-People-with-Cerebral-Palsy.pdf

Action CP is delighted to have been invited to present on early intervention for cerebral palsy to the Institute of Health Visiting conference in Manchester today.

Summer Exhibitions Saturday: Lewis Fisher & Richard Ansett

Royal Photographic Society - Free talk in Bristol or Online. As part of the International Photography Exhibition 163 we are holding a Summer Exhibition Saturday event on 6 August 2022 where a selection of exhibitors will be talking about their work on show at the RPS. We are delighted that Lewis Fisher who is featured in the exhibition will be giving a talk alongside Richard Ansett who worked with Lewis to create the images in the exhibition.
In Lewis’ words…..: I have dystonic cerebral palsy which affects all my limbs, head and trunk. I use a wheelchair and eye gaze to communicate normative speech. I have low muscle tone spasticity causing extreme uncontrollable movement. I feel people often only see me as a ‘disabled’ person and not for the person who I actually am. When I was younger everything was about what I couldn’t do, but I am very positive now and challenge myself to have the best control I can. These images are the first selfies I have ever been able to take thanks to the design of a special trigger. I found it really good taking my own pictures.
Further Information & Links:
RPS Journal article about Lewis here
Richard’s website which show some behind the scenes pictures on how Lewis created his work https://richardansett.com/gallery/upcoming-current-exhibitions/selfie-lewis/
Register to attend the talk in Bristol or Online https://www.eventbrite.co.uk/e/summer-exhibitions-saturday-lewis-fisher-richard-ansett-tickets-381765108717

Summer Exhibitions Saturday: Lewis Fisher & Richard Ansett Listen to fascinating free talks with exhibiting photographers in the International Photography Exhibition 163.

Well, they did it! A message from Angus, Finn,Rory and Will who have raised an amazing £5955 for Action Cerebral Palsy: "Firstly, we’d all just like to thank you for donating to support our cycle ride. As we mentioned when we first finished, we have decided it was possibly one of the toughest, yet also most rewarding, weeks of our lives. Knowing quite how many people were supporting us (currently at over 200) really kept us going when the physical or mental side of the ride got tough...In fact, we thought you might be interested to know quite how it all got tough and where the
adventures happened: to begin, it turns out that it isn’t very possible or a good idea to cycle in 42 degree heat, which we think is one of the hottest temperatures ever experienced by the 4 of us! We were greatly amused when each town we cycled through displayed warnings about the great heatwave and how people were to avoid vigorous exercise. Nor is it pleasant to experience the full range of climates offer by cycling through very heavy thunderstorms along the coastal road no more
than 4 days later. There were however other, less negative, adventures too. We adopted the lead of other French cyclists whom we’d come across (it turns out France is officially a nation of wannabe le Tour winners) and decided that red lights in
empty towns didn’t apply to us, nor did diversion signs and road closures. A quick hop off the bike or clever detour to march through or around a small road closure saved us many needless kilometres in the heat. We were asked on the day that we finished for our top 3 moments and so we wanted to share these
with you as well:
On about the 4th day we discovered a new found fitness and started to fly along down a 20km long Roman Road from Nantes towards to the Coast, at between 27 and 30km/h, which was about as fast as we could consistently go on the flat. The collective feeling in a small peloton was exhilarating and it was a fantastic feeling to realise we had almost made it back to the coast having started there 4 mornings earlier.
Towards the end of the tour, cycling through the rolling landscape of the vineyards in Medoc was the most beautiful view that we came upon and it was an amazing place to be able to experience,
especially at the slower pace from being on a bike, with only chateaus and vineyards all around.
Above all however, one of the best moments of the tour was being together to find out that we had reached £10,000. While we had started off with smaller expectations, and progressively updated our targets, by day 5 we decided that it was achievable to raise a 5 figure sum and so we set about to raise this level of support. When, on the day that we finished the ride, we crossed the threshold level we were certainly joyous, if not a little overwhelmed, but to be together to do this was a really special moment."
Congratulations and huge thanks to you all for your incredible efforts and to all who sponsored the team from everyone at Action Cerebral Palsy!

Our intrepid fundraiser, Angus McIntyre and friends Rory, Fin and Will have sent this update; "Day 5 of 8 completed, and we're at over £2100 for Action CP now - only just over £300 until the next goal that we set at £2500 which is brilliant! Our days are sometimes filled with punctures (and one crash on day 1) but the lovely French countryside is lovely to watch passing by. We've covered 418 of our 700 odd km and are looking forward to our last 3 days even though we're knackered! Best, Angus".
Merci beaucoup to you all on behalf of everyone at Action CP! Please help the team to reach their goal by following the link https://gofund.me/622d7379

Huge congratulations to our ambassador Bethany Sheppard on her graduation from Ruskin University last week. If you could join Beth in sharing your story with Action CP, please get in touch via [email protected]
👏👏

Lost in Translation for Action CP, organized by Angus McIntyre

Our wonderful supporter Angus McIntyre and friends Rory, Fin and Will completed day 1 of their adventure to ride from St Malo to Bordeaux for Action Cerebral Palsy and other charities today. Please support him by following link https://gofund.me/622d7379
Thank you Angus and bon chance from everyone at Action Cerebral Palsy.

Lost in Translation for Action CP, organized by Angus McIntyre 4 of us (Rory, Angus, Finn and Will) are cycling down the West Coast of France in Ju… Angus McIntyre needs your support for Lost in Translation for Action CP

connectpa.co.uk

‘UPDATE: is extending their call for evidence on transitioning to adulthood with until 12 August. Read more here:https://connectpa.co.uk/wp-content/uploads/2022/07/APPG-on-CP-ToR-Transitioning-to-Adulthood-Final.pdf ’

connectpa.co.uk

Parents- does your child have hip problems associated with cerebral palsy? Action Cerebral palsy has received the following request from researchers at the University of Liverpool, Alder Hey Children's NHS Foundation Trust;

Dear parents

Re: Screening for hip problems amongst children affected by Cerebral Palsy – Parent workshop 6th July 6-7pm

We are a research team who are working on an automated system for measuring hip dysplasia in children with cerebral palsy. At the moment, there is the national surveillance system - called CPIPS - which looks for hip problems with regular X-rays of the hips (the frequency of x-rays depending on the severity of the cerebral palsy). Once the x-ray is taken, the doctor/ physiotherapist has to make some measurements on the x-ray and then determine if the child could benefit from any intervention.

One of the greatest challenges we have found with the system is that the doctors/ physiotherapist aren’t always able to give as much time as they’d like to the x-rays. So the research team are striving to make the service even better by building a computer system that uses machine vision (or artificial intelligence) to take the measurements automatically. This will eventually input the results of the x-rays automatically into the CPIPs database - and any changes can be flagged to the treating doctors.

However, there are always anxieties about using machine vision to replace experts - which we are really aware of. We are therefore looking for parents to help us understand the problem, identify their concerns and address how we can best respond to anxieties.

The research team intend to hold two workshops with parents with Cerebral Palsy under the age of 16 years. The first workshop has been organised for Wednesday 6th July at 6pm. The online workshop will last 1 hour and focus on:

· Introduction to project (including why we are doing it)

· Discussion of implications of project (is it acceptable to get a machine to make measurements)

· Update on current state of the project and future plans

The second workshop will be arranged in the Autumn (most likely via Zoom).

You will receive £25.00 for attending the workshop to thank you for your time.

If you would like to know more about the research before you register, please contact Jenny Preston (Senior Patient and Public Involvement Manager) on [email protected]

Please register your interest by emailing Jenny on the above email.

Kind regards

Jenny Preston on behalf of the research team

connectpa.co.uk

The Secretariat are calling for evidence on Transition to Adulthood for young people with CP. Your views as the CP Community are vital to the work of the APPG and we want to remind you that the APPG on Cerebral Palsy is holding a call for evidence for our forthcoming report on the transition to adulthood for young people with Cerebral Palsy.
We are taking written submissions for our report to Parliamentarians with a deadline of 5pm on 15 July. There are still two weeks left to get your submissions in.
We are seeking evidence from people with lived and professional experience of the process of supporting the transition of young people with cerebral palsy (14-25) into adulthood, with a focus on health, education and care needs. This evidence will be used to inform the recommendations the APPG makes to Government. Input from any interested stakeholder on these topics will be considered.
You can view our full call for evidence herehttps://connectpa.co.uk/wp-content/uploads/2022/05/APPG-on-CP-ToR-Transitioning-to-Adulthood.pdf
Please limit your submission to 3 sides of A4, use clear sub-headings and include a brief bullet summary of your evidence at the top of the submission. We will also accept submissions in video or other non-written formats such as audio files of no more than two minutes in length.
Send with the subject line: APPG on Cerebral Palsy – call for evidence, to: [email protected]

connectpa.co.uk