Tag Archives: Ambassadors

Vanessa Hooper

Vanessa with Dylan, Ryan and Taran

Vanessa with Dylan, Ryan and Taran

Vanessa is mum to Aiden, Dylan, Ryan and Taran – five year old Ryan has Down’s Syndrome. The family have done lots to help the charity since enjoying a well earned break at our holiday home last year and we are now delighted to welcome mum Vanessa as one of our Ambassadors.

The whole family have been more than happy to help the charity out – Ryan has pulled the winning tickets in our raffle draw and they had a family photoshoot to help with the charity’s marketing. Vanessa also took part in our night-time Sleep Walk to raise funds for Cerebra and Dylan and Ryan were guests of honour at a concert by the Angelicus Choir.

Vanessa told us:

“Life can be tough when you live with someone with extra needs. Having the support from Cerebra has been invaluable to us. We, as a family, cherish the opportunity to give back and hopefully raise awareness about the work that Cerebra do and the neurological conditions they support”

Jay Jayamohan

Jay Jayamohan

Jay Jayamohan

Jay Jayamohan is a Consultant Neurosurgeon at  John Radcliffe Hospital in Oxford. He is a specialist in paediatric neurosurgery and craniofacial reconstructive surgery.  He specialises in adult and child head trauma, paediatric neurosurgery and also in non-accidental head injury cases.

We are delighted to welcome him as an Ambassador for Cerebra.

Poppy and Rob Jones

Poppy-and-rob-on-beachEleven year old Poppy was born with quadriplegic cerebral palsy and chronic lung disease. She can’t sit, stand, roll or support herself and life is a daily challenge for her. She has suffered many health problems over the years and there have been times when doctors didn’t think she would pull through.

But having a life-limiting condition doesn’t stop Poppy having fun. Poppy is a determined character with a great sense of humour. Her sense of adventure knows no bounds. She is a real thrill seeker and adrenaline junkie and has a true competitive spirit.

In June 2016 Poppy and her dad, Rob, took part in the Cardiff Triathlon together to raise money and awareness for Cerebra using custom made equipment specially designed by our Innovation Centre. To date the pair have raised over £10,000 for us and have plans to take part in many more events. Poppy told us:

“Cerebra is special to me because they help support children like me with brain related conditions. When I was younger I spent a lot of time in hospital. In the past 3 years I have been better and helped fundraise for charity. This year, I did my first triathlon for Cerebra – it was amazing! My type of cerebral palsy is rare so I like to tell people more about disabilities and me. Next I would like to do the London marathon so more people can hear about Cerebra”.

The pair have since become Ambassadors for Cerebra and are delighted to be able to help raise awareness of the work the charity does. Rob said:

“Poppy and I are excited at the opportunity to be Ambassadors for Cerebra. It was a real pleasure working with the Cerebra team on #poppysdream . The Cerebra Innovation Centre is a superb resource and important partnership with the University of Wales Trinity St David.  The charity has great people, is very well run and creates high quality outcomes for families . Diolch!”

Angelicus Celtis

Ryan and Dylan with the Angelicus choir

Ryan and Dylan with the Angelicus choir

We are delighted to announce that the Angelicus Celtis choir, a group formed from the prestigious Hywel Girls’ Choir and Hywel Boys Singers in Llanelli, have become Ambassadors for the charity.

The choristers were delighted to meet one of the local families Cerebra helps at their Last Night of the Proms concert at Y Ffwrness on 4th June. Four year old Ryan Hooper, who has Down’s syndrome, and his older brother Dylan thoroughly enjoyed the music, singing, and vigorous flag waving! They were also thrilled to meet the girls who sang Ryan’s favourite song, ‘Let it Go’, just for him.

The Hooper family from Kidwelly have enjoyed a well-deserved break at Cerebra’s fully adapted and equipped holiday home in Pembrokeshire. Many families with children who have special needs find it incredibly difficult to find a place to go on holiday that caters for their needs – Cerebra’s holiday home is often the only chance families have to spend quality time together.

Mum Vanessa said: “Life can be tough when you live with someone with extra needs. Having the support from Cerebra has been invaluable to us. We, as a family, cherish the opportunity to give back and hopefully raise awareness about the work that Cerebra do and the neurological conditions they support.”

Cerebra are grateful to John Hywel Williams, Jeremy Hywel and the choristers for their on-going support.

Kim Philpotts

Kim Philpotts

Kim Philpotts

“I am married to my husband Scott and I’m mum to two little boys – Fraser, aged 3, and Archie, aged 7. Both boys were born prematurely. Archie suffered lots of complications at birth and has a bleed on the brain known as PVL. As a result he has learning disabilities, is on the autistic spectrum, has hypermobility, and conductive hearing loss.

I also work as a nurse practitioner in general practice with special interest in childhood neurodevelopmental difficulties and mental health.

I like to be busy, and as I wanted to help families that were in a similar situation to our family, I set up a special needs group known as ‘What Makes You Different Makes You Beautiful’.

Kim's son Archie

Kim’s son Archie

I started by running coffee mornings at local community centres, ran trips and  workshops and the service grew. Now I have successfully raised enough money to open a centre for families with children whom have special and additional needs. This was my dream to do and in less than two years I made it happen. The centre offers lots of direct support to the families such as workshops, cooking sessions, gardening, events, trips and support for siblings.

We heavily rely on Cerebra publications for information and Cerebra’s Regional Support Officers regularly visit the centre to offer advice and support and help parents access Cerebra’s services.

 

I am proud to be an Ambassador for Cerebra and be in a position to promote Cerebra’s services. Having a child with disabilities has a huge impact on the whole family and without the kind of support that Cerebra offer, it’s a lonely journey”.

Nicola Tilson

Nicola and Alfie

Nicola and Alfie

“Hello, my name’s Nicola.  I’m mum to two very beautiful boys,  Sam, aged 10 and Alfie, who’s 4. I’m married to Lee and we live in Yorkshire with our chocolate Labrador, Honey.

Our youngest son,  Alfie was born with a rare genetic condition called HHT (hereditary haemorragic telangiectasia). It’s a condition that can cause abnormal connections between arteries and veins and it can present differently from person to person.  Unfortunately, Alfie became very poorly at 6 weeks old when they found he had a very rare complication of HHT. He had something called AV Fistula in the right side of his brain which had created a very large and fragile aneurysm (a sack of blood).

Alfie was taken to Great Ormond Street Hospital to undergo a life saving procedure but suffered bleeding on his brain. He spent almost a month in intensive care. Initially we were were told it was unlikely he’d make it and, if he did, he would suffer from severe disabilities.  Despite this, Alfie held on and when he was eventually woken up from his induced coma his recovery was remarkable.  Alfie went on to have this procedure a further four times before they could fully close off the blood through this AVM. All of this before he turned two.

Laura, Sam and Alfie

Laura, Sam and Alfie

Amazingly Alfie’s development was truly wonderful, he hit all milestones early or on time and I think we all let out a deep breath after what had been a very frightening two years.  But at  2 1/2, Alfie started to regress. All the language he had learnt and used he seemed to lose,  he was reluctant to talk and he drifted off into his own world. It was a very worrying time and it seemed to take so long to get the answers we desperately wanted.

He was diagnosed with autism just before his 4th birthday,  I remember the lady giving us a big folder full of information and then off we went.  I didn’t understand autism, I didn’t know any one with autism,  I only knew what I thought I knew which turned out to be all wrong.  I would spend hours when the children were in bed reading and researching as much as I could on everything and anything autism related, hoping something would click, something I could use to bring Alfie back to us.

Alfie and Sam

Alfie and Sam

On a piece of paper in the pack was a website address for Cerebra. It didn’t say anything else but I thought I’d take a look.  I’m so glad that I did.  We were put in touch with Laura, Cerebra’s Regional Officer in our area. Initially her visit was to help us complete some forms but she did so much more.  She signposted support in the community, recommended sites where I could find sensory activities for Alfie and then pointed us in the direction of ABA (applied behavioural analysis).  She even loaned me her own personal book.

Laura was so informed and understood us completely.  I was really lost and Laura helped me make sense of everything. Within a week of Laura’s visit, Alfie was asking me to play with him-this was huge! He had stopped doing this, preferring his own company.  One year on and I’m still in touch with Laura. She has helped us with understanding his education rights and the EHCP process and much more.  I tell everyone about Laura and Cerebra and just the massive difference she made to our lives.  I will be forever grateful.  Alfie still has struggles but is making massive progress every day.  He plays with me, his Dad and his big brother. His speech is improving and he is just much more involved in school and in home life. He is an absolute joy.

I started fundraising for Cerebra as a way of saying thank you. I made reindeer food at Christmas, organised book sales and raffles and have found homes for collection boxes. My family have also started trying to help with my sister and aunty both raising funds. I’m now looking forward to my new ambassador role and to finding new opportunities to raise funds and spread the word about the good work of Cerebra.”

Angelicus Choir become Ambassadors for Cerebra

Ryan and Dylan with the Angelicus choir

Ryan and Dylan with the Angelicus choir

We are delighted to announce that the Angelicus choir, a group formed from the prestigious Hywel Girls’ Choir and Hywel Boys Singers in Llanelli, have become Ambassadors for the charity.

The choristers were delighted to meet one of the local families Cerebra helps at their Last Night of the Proms concert at Y Ffwrness on 4th June. Four year old Ryan Hooper, who has Down’s syndrome, and his older brother Dylan thoroughly enjoyed the music, singing, and vigorous flag waving! They were also thrilled to meet the girls who sang Ryan’s favourite song, ‘Let it Go’, just for him.

The Hooper family from Kidwelly have enjoyed a well-deserved break at Cerebra’s fully adapted and equipped holiday home in Pembrokeshire. Many families with children who have special needs find it incredibly difficult to find a place to go on holiday that caters for their needs – Cerebra’s holiday home is often the only chance families have to spend quality time together.

Waving the flag at the last night of the proms.

Waving the flag at the last night of the proms.

Mum Vanessa said: “Life can be tough when you live with someone with extra needs. Having the support from Cerebra has been invaluable to us. We, as a family, cherish the opportunity to give back and hopefully raise awareness about the work that Cerebra do and the neurological conditions they support.”

Cerebra are grateful to John Hywel Williams, Jeremy Hywel and the choristers for their on-going support.

The charity’s Ambassadors help to raise vital awareness of the charity’s work.

Kim Philpotts is Cerebra’s newest Ambassador

Kim Philpotts

Kim Philpotts

Kim Philpotts from Malvern in Worcestershire has recently become an Ambassador for Cerebra:

“I am married to my husband Scott and I’m mum to two little boys – Fraser, aged 3, and Archie,  aged 7. Both boys were born prematurely.  Archie suffered lots of complications at birth and has a bleed on the brain known as PVL. As a result he has learning disabilities, is on the autistic spectrum, has hypermobility, and conductive hearing loss.

I also work as a nurse practitioner in general practice with special interest in childhood neurodevelopmental difficulties and mental health.

I like to be busy, and as I wanted to help families that were in a similar situation to our family, I set up a special needs group known as ‘What Makes You Different Makes You Beautiful’.

Kim's son Archie

Kim’s son Archie

I started by running coffee mornings at local community centres, ran trips and  workshops and the service grew. Now I have successfully raised enough money to open a centre for families with children whom have special and additional needs. This was my dream to do and in less than two years I made it happen. The centre offers lots of direct support to the families such as workshops, cooking sessions, gardening, events, trips and support for siblings.

We heavily rely on Cerebra publications for information and Cerebra’s Regional Support Officers regularly visit the centre to offer advice and support and help parents access Cerebra’s services.

I am proud to be an Ambassador for Cerebra and be in a position to promote Cerebra’s services. Having a child with disabilities has a huge impact on the whole family and without the kind of support that Cerbera offer, it’s a lonely journey”.

We are always looking for new people to join our team of Ambassadors. If you are interested you can find out more here or contact Elaine Collins on elainec@cerebra.org.uk

Could you be an Ambassador for Cerebra?

Cerebra Ambassadors group photo

Some of our Ambassadors at the Cerebra Children’s Awards 2014.

Cerebra has a team of ambassadors, made up of parents, carers and professionals, who are passionate supporters of our work.

Our ambassadors come from all sorts of backgrounds and walks in life – what they share is a passion for the work that Cerebra does and a desire to let other people know about it. They help to raise awareness of the charity in their local area giving as much or as little time as they can spare. We really couldn’t do it without them.

Family relaxing togther

The Hoyle family

David and Mary-Jane Hoyle are just two of our enthusiastic Ambassadors . They support Cerebra because when they were told that their beautiful 18 month old daughter Annie-May had massive brain damage, cause still unknown, they felt lost and alone with nowhere to turn: “Cerebra have been with us on our journey and we can’t praise them enough”.  In supporting Cerebra the Hoyles have attended and given talks about the charity, raised money through sponsored events and appeared in a promotional video. You can meet the rest of the team here.

If you think you could be an Ambassador, or know someone who would, please get in touch with Elaine Collins on 01267 242583 or elainec@cerebra.org.uk. We’d love to hear from you.

If you’d like to find out more about the Ambassador role you can download the role profile here.

Cerebra Ambassador Role Profile

Sian Taylor

Sian Taylor

Sian Taylor

Sian lives in Cardiff with her family. Her son Ollie has a rare genetic condition, Wolf Hirschorn Syndrome, and epilepsy.  The condition means that Ollie’s growth and development are delayed, he has an intellectual disability and suffers from seizures. There is no treatment or cure.

We met Sian when the family took a break at our holiday home in Pembrokeshire and she didn’t need much persuading to support us an Ambassador.

Sian is full of praise for the work Cerebra does to support families and spreads the word through her professional and social networks.

“Cerebra is so important to families, it helps to realise that many other families are experiencing the same difficulties in raising their disabled child, but this special organisation is focused on making the children’s lives better, in any way it can. We really benefitted from a peaceful break in Valecchia. It was such a treat, to stay somewhere so lovely, with everything we needed, sensory room and all. Ollie even enjoyed a hydrotherapy session nearby. The break was therapeutic for the whole family”.Sian Taylor