The Fred Foundation

April Contributor Spotlight – Lucinda Marsden


Today we are spotlighting Lucinda Marsden.

Lucinda is an AutSPACEs collaborator, who has given valuable insights to the project since it’s inception. She has been an important advocate for diverse inclusion and fair remuneration for participatory scientists.

I am the mother of an autistic young person with complex needs.

I promote acceptance and awareness of individuals, families, and caregivers affected by severe forms of autism by giving a voice to their realities and needs.

They are a vulnerable, growing and overshadowed population and there are huge gaps in policy and services and the special attention they require.

I feel my job is to listen and then give ALL autistic people a voice. I actively seek out and take part in focus groups and discussion sessions where I can share my lived experience and ideas for how to make autism research serve everyone, not just the easiest to reach.

I strongly advocate for diverse inclusion and fair remuneration for autistic people and caregivers involved in autism research. Otherwise, charities and researchers risk discriminating against the very groups they are trying to help, whom, in many cases, cannot work and as a result live below the poverty line. No one works for nothing and nor should caregivers and autistic people. Our knowledge is worth something.

I was asked by the Head of Priors Court school ( to join their research board.

I presented with the Alan Turing Institute at CogEx.

I am an @womenofyear alumna.

In my spare time, I am a writer of fiction and non-fiction and I like to run (slowly) and read a lot – not at the same time.

Lastly, I love this recent Twitter quote from father, director, writer and teacher, Stephen Unwin (@RoseUnwin)

“In our championing of the many splendid things that so many learning disabled and / or neurodivergent people can do, we must be careful not to marginalise or forget those who can do less.”

Sponsor Justin Rock!

Support the Fred Foundation by sponsoring Justin Rock in the Brighton Half Marathon.

Long time supporter of the Fred Foundation, Justin Rock, is running the Brighton Half Marathon on the 26th February. Justin has raised  funds for us before – cycling to Paris and various treks. Why is he choosing to support us? “Duff introduced the charity to me which I know means a lot to him and also to my close friends who’ve heard about Duff’s experiences getting support for his autistic child who has complex needs. Every challenge we’ve done at the company has been for the Fred Foundation. We know that every penny that we raise goes towards this brilliant cause, helping the numerous families supported by The Fred Foundation” 
Please support us by sponsoring Justin.

Applying for funding

The Fred Foundation is a tiny charity that gives grants to families towards running accredited Verbal Behaviour programs like a Dr Patrick McGreevy Ph.D, BCBA-D style of VB program that teaches language and skills in the natural environment, solely through the child’s motivations. (NOT Lovaas style ABA – structured and rigid – all taking place in one room). We do not give grants for anything else. Due to shortage of funds we are giving priority to families who are working towards a Special Educational Needs Tribunal to achieve Local Authority funding for their child. If you live in the UK and have a an autistic child with complex needs and have never received funds from us and are appealing for specialist provision for your child, then please email us on

Recent quotes!

‘Thank you from the bottom of my heart. Your charity helped my son. He is verbal and excelling in life. Your funding helped me win a tribunal to give him the support he needed. Thank you!!!’ ANON

‘We will never forget how much your charity helped our J xx’

Sponsor Fred’s dad

Many of you will know that this charity was named after Fred, who is the first child we helped. Although Fred no longer receives any funding from us, he is happily ensconced in a great school, his amazing family remain constant supporters and fundraisers. In less than 2 weeks time, on Sunday October 9th Duff, Fred’s dad, will be running the Royal Parks half marathon on behalf of The Fred Foundation. No matter how fit you are it is always an effort to get geared up for such a long run, and he is making this effort because he knows how tough a couple of years it has been, for fundraising but most especially for our families. Please support us by sponsoring him via the link below. (All funds raised go to our families, minus a tiny amount for our accountant!)                       

Duff’s running The Royal Parks Half Marathon (Fred’s Dad)

I first ran the Royal Parks Half for The Fred Foundation 10 years ago and this year I’ll be doing it again.  The course hasn’t got any shorter and I don’t seem to be any younger but I’m still proud to be running for The Fred.  

The  charity, inspired by my son Fred, has been supporting autistic children with complex needs and their families since 2007.  

It helps fund education programmes that allow autistic children with complex needs to reach their potential through individualised, specialised programmes that match their needs instead of a ‘one size fits all’ approach.  Education is the only commonly accepted intervention for autistic children with complex needs and in every case, the early years are critical to finding that child again and unlocking their world. 

The recent pandemic has highlighted, with sometimes heartbreaking results, how lack of the right support can cause immense suffering, not only to children with complex autism, but also their families.

Please donate what you can here – it will help The Fred Foundation and also inspire me to get round!


Donating through JustGiving is simple, fast and totally
secure.  Once you donate, they’ll send your money directly to The Fred Foundation and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer.


Cabinet Office Disability Survey to develop a National Strategy for Disabled People – ends 23 April 2021 – please contribute

It is important that we all contribute to the UK Disability Survey if we possibly can. It seeks the views of disabled people, carers, parents or as someone with an interest in disability issues.



Felicity Ellacombe writes ‘Lucinda and Gilbert are running for Fred in the Royal Parks Half Marathon on the 11th April. This will be the first fundraising event we have been able to hold for a year, due to Covid. Both of them will be running in their home areas instead of through the Parks. If you would like to support them here are the links.

Our families have been having a tough time during the pandemic and sadly we have not been able to help them very much. Lucinda has described the problems very clearly in one of her recent posts.’

“Many autistic children with complex needs keep their lives rigid and routine-led to help them feel in control of a world they do not understand. Families have suffered greatly during the pandemic because their autistic children/young people, often with very little speech and learning disabilities, do not understand why they cannot stick to the routines that help them feel safe. If you have autism with complex needs – and will never understand what a virus is – you think it’s your mum, dad or caregiver stopping you doing all your usual activities. Can you imagine the impact of this on parents (the majority of them single) for months on end trying to cope with their children’s pain and lack of understanding every single day alone with no break – often sleep deprived?

Many neurotypical people will have mental health issues due to Covid, but at least they know why it’s happening and what a virus is.

I will be thinking of a particular person as I run/walk/stagger. Many of you may have read about the despair of a friend Olga Voronina/Freeman who loved her autistic son with complex needs SO dearly, but was taken to the brink during Covid. I will be thinking of Olga, my Fred and all of the families who’ve suffered so much during Covid – and continue to do so. Every donation goes straight to the families via The Fred Foundation and nothing is swallowed up by admin costs. Not many charities can say that.” x
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