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Helping a Little Boy with Rare Genetic Disorder

Donation buys a sensory room to help Toby, a little boy with rare genetic disorder

Six-year-old Toby Conway has an incredibly rare genetic disorder called De Novo ZNF 292 syndrome. It is so rare, his doctors and consultants have never previously encountered a patient with this diagnosis. And Toby’s parents are unable to find any other parents in a similar situation to share their experiences.

Toby has autistic traits, speech delay and extreme hyper mobility, His abnormal brain structure primarily affects his short-term memory (so he has some educational challenges). He is physically weak and has a high risk of epilepsy.

Despite all his challenges, Toby embraces mainstream education and loves his school. His parents told us:

“Every day, he runs into school with a huge smile on his face; it’s priceless. He is honestly the most polite, infectious and caring little boy. He is a pleasure to be around for both adults and other children. His school is amazing, and we’re hugely grateful for their support.”

The Axis Foundation Trustees awarded Toby’s school (Northgate Primary School Bishop’s Stortford, Hertfordshire) £10,000 to create a sensory room. This will not only help Toby’s sensory processing disorder but will also benefit the 100 neuro-diverse pupils at the school.

Thanking the Foundation, Toby’s father Mark Conway said: “This donation will make such a huge difference to Toby and all other pupils at his school, both neurodiverse and neurotypical. His school do an amazing job with limited resources, and their new sensory room will create a safe space for the kids that will be invaluable. Thank you so, so much.”

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Hug-a-Bug World (HBW)

Positive emotional wellbeing for young people

Positive, relatable storylines in books; “I am Unique, “I am Brave” and “I Can Do It” affirmation hearts and tactile toys: these all help the emotional development of Hug-a-Bug World’s Early Years and young children. Setting the tone are adorable bugs Sedric Snail, Bella Bee and friends who support one another and learn as they go.

The Axis Foundation donated £15,000 to HBW to provide books, affirmation hearts and toys. And we will be working with them to reach children and families in areas where Axis, our parent property services company, works.

“At a time where Mental Health challenges in our younger generations is finally getting some attention in the media, we at HBW are forever grateful to the Axis Foundation for making it possible for us to engage with thousands of children, through their generous donation” – Julia Keys, Founder

More about Hug-a-Bug World

The HBW programme promotes positive emotional wellbeing for young people. This is proven to have a beneficial effect on academic focus, building good relationships, and development of empathy and understanding of each other and the natural world.

Hug-a-Bug World is currently working with 30 schools in the Royal Borough of Greenwich in London. They have also worked closely with the Holiday Activity Fund (HAF) programme in multiple UK locations. All children (10,000 +) take home a storybook, a Hug-a-Bug heart and activity sheets. They demonstrably increase their self-confidence, empathy, self-worth, resilience, and acceptance of themselves.

The Chairman of the Axis Foundation Trustees, Peter Varney, was very impressed by the good feedback from Birmingham HAF. So he engaged Hug-a-Bug World to deliver their HAF programme via Millwalls’ Community Fund – with similarly successful results.

See more about Hug-a-Bug’s amazing work here

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Strongbones Children’s Charitable Trust

Winter warmth for vulnerable children with bone conditions

Strongbones Children’s Charitable Trust helps children with severe disabilities/complex needs coupled with bone conditions such as scoliosis, bone cancer and spina bifida.

Each winter, many Strongbones children are hospitalised due to hypothermia, pneumonia, respiratory disease and Covid. Many children are from families in poverty. And fuel poverty adds to the severity of this problem.

The Axis Foundation’s winter 2023 donation of £5,600 buys 40 Winter Warmer packs to help the charity keep their children warm. Each pack consists of a penguin fleece blanket, an oddie wearable blanket, a pair of warmies soft boots and a warmies penguin handwarmer.

“This is wonderful news!! Thanks to all the trustees for agreeing to this incredibly generous grant. We have many children who will hugely benefit from these lifesaving packs” – April Fitzmaurice, Manager

More about Strongbones

Strongbones supports over 1,000 families of vulnerable children in Essex. They work to decrease social isolation and increase inclusion through supplying disability/educational equipment and providing educational opportunities. The charity also provides practical and emotional support to parents and carers, respite breaks, group residentials and accessible sports.

There’s more about their work here

 

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Azalea

Helping survivors of sex trafficking

Azalea supports and empowers women surviving domestic and international sex trafficking through many programmes including Drop-In and Outreach, 1-1 or recovery support.

The Axis Foundation’s donation of £10,000 helped Azalea buy a Mobile Drop-In Van: many women find it challenging to come to Azalea for the first time: years of extensive abuse foster a deep lack of trust. So the new van will enable Azalea to go to them.

“We are deeply grateful for the dedicated support that the Axis Foundation has shown Azalea by awarding this grant. Not only have they demonstrated their belief in the work that Azalea does, they have demonstrated their belief in the possibility of transformation that is present for every survivor of sex trafficking. A belief that all are worthy of a life, free. We thank the Axis Foundation for investing in the lives of the 421 women that we know and care for, who are surviving sex trafficking and for partnering with us in the creation of the Mobile Drop-In Van,” Kate Dunwoodie, Deputy CEO

More about the Mobile Drop-In Van

All women who engage with the Azalea’s outreach Mobile Drop-In Van will receive non-judgemental care and support in the aftermath of trauma: from being held captive in brothels or being forced into on-street sexual exploitation. The van will be a safe space, away from the crowds, out of sight of pimps and traffickers, reducing the risk of re-exploitation. It will offer best opportunity for intelligence and safeguarding disclosures as well as building relationships with Azalea’s friendly, specialist staff and volunteers in a comforting space where guests can sit, enjoy a hot drink or food and acquire clean clothes and safety kits.

More about Azalea here

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Opportunity for Bespoke Care for Charles

Private autism assessment and chance for bespoke care

The Trustees of the Axis Foundation were delighted to donate £1,000 to help Luke Comb acquire a private assessment for his son Charles, who is showing clear signs of autism. A private autism assessment opens up opportunities for bespoke care.

“The rewards will be endless, the impact huge and life changing. Thank you” – Luke Comb

More about Luke and Charles

Luke desperately wanted a speedy assessment for his son Charles who was showing signs of autism. Getting Charles the right diagnosis early means he can be given the support he needs and opens up opportunities including access to special development programmes and bespoke care.

But waiting lists are long and family financial resources limited. So Charles applied to our Foundation for support.

In Luke’s words: “Charles is showing clear signs of autism. He is non-verbal and struggles in many everyday settings including with danger awareness and interaction. Professionals believe he is Autistic but cannot assess him for some time, possibly a couple of years. During this time, he won’t have full support or access to programmes that would benefit him.

“I believe this age is the crucial time to have him in the correct setting with access to purpose-built programmes for his development that will benefit him all through life. We believe, once fully diagnosed, he will have full support at an early stage when it is most needed.”

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Mollie’s story

Helping care for a small child with Ataxia Telangiectasia (Louis-Bar syndrome)

Little Mollie has Ataxia Telangiectasia, a devastating, rare, inherited childhood neurological disorder. It affects the part of the brain that controls motor movement and speech.

The disease is also known as disease Louis-Bar syndrome. It is complex and additionally affects the lungs and immune system as well as causing sensitivity to radiation and increased risk of cancers.

It is also progressive and there is no cure. Decline starts increasing from age of five and little Mollie has recently turned six. It is most likely that is she will need a wheelchair by the age of 10.

Moved by the plight of Mollie, the Trustees of the Axis Foundation agreed to a donation of £11,133. This will purchase her a Mollii suit (designed to relax muscles through neurostimulation), a Gallileo vibration board (to help with muscle tone) and also some specialist physiotherapy.

Emily Barker, Mollie’s mother, said: “Thank you so much for your email – we are over the moon that Mollie’s application was successful and so grateful she will now have access to a Mollii suit and Galileo board along with the specialist therapy.

“Our little girl deserves the best opportunities and chance in life so thank you so much for helping to make this happen – it really means the world to us.”

“We realise that right now without a treatment available the best options for Mollie are to support her strength and abilities with specialist therapies. We are therefore currently planning a Mollie’s Miracle Family Funday in August – this will be to raise money directly for Mollie to take part in extra therapies such as horse-riding therapies and hydrotherapy to ensure we are doing all we can to keep her muscles strong and help fight the symptoms of this devastating disease.”

Molllie’s parents run Mollies Miracle, with support of friends and family, raising funds to research into Ataxia Telangiectasia. More information here

You can donate to Mollie’s Just Giving page here

Mollie’s Miracle Family Funday, Cliffe Woods Primary School, View Road, Kent ME3 8UJ – 12-4pm, Sunday 6 August

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Youth Talk

Creating safe place for young people to talk in confidence

Youth Talk offers free, confidential counselling that improves the quality of life of children and young people in St Albans, Hertfordshire.

And our award of £10,000 to Youth Talk will help them fit out new, larger premises to create a more productive, safe and pleasant space for young people to talk in confidence. By creating eight counselling suites, the charity will double their current capacity: part of their five-year strategy is to double the number of 1:1 sessions they offer by 2026. It will also give the charity office and meeting spaces for the first time in its 25-year history.

 “Wow – what totally wonderful news. A HUGE thank you on behalf of everyone at the charity and more importantly thank you on behalf of the young people you will be supporting. Our new home is a critical part of our new five-year strategy for growth and we could not have done it without the tremendous support of the Axis Foundation” – David Barker, Chief Executive, Youth Talk

More About Youth Talk

Youth Talk is a registered charity and a Hertfordshire County Council approved provider of counselling psychotherapy. They offer free, confidential counselling that improves the quality of life of children and young people aged 13-25 in St Albans, Hertfordshire.

When young people seek support from Youth Talk, the most frequently reported symptoms include depression, anxiety and stress. Early support helps prevent mental health problems from worsening and enables young people to succeed at school and earn a living so they can support themselves and their families.

The charity believes that every young person should have a safe place to talk in confidence and get early support for their mental health needs, so they can move on with their lives and pursue their dreams.

More about their work here 

 

 

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Asthma Relief

Our donation buys nebulisers for people with asthma.

Asthma Relief provides essential Medical Breathing Equipment such as nebulisers to hospitals, doctors’ surgeries, medical centres, hospices and palliative care teams.

The Axis Foundation was delighted to donate £5,700 to Asthma Relief to purchase 30 nebulisers to support their Hospices in London programme.

“Asthma Relief Charity was delighted to receive a grant of £5700.00 from the Axis Foundation. This grant will help support hospice patients in London who need nebuliser treatment as part of their vitally important palliative care. We have already allocated 20 nebulisers, 10 of which were placed at the Royal Trinity Hospice. We were absolutely thrilled to learn that the hospice now has a nebuliser available for every room on the Inpatient Unit!

On behalf of Asthma Relief Charity, the hospices, patients and carers we would like to say A HUGE THANK YOU to the Axis Foundation” – Dave Penman, Founder & Honorary Manager

More About Asthma Relief

The Swindon-based charity responds to urgent requests for nebulisers. Requests can come from anxious parents, patients, doctors, the isolated or the elderly. For all of them – they or a loved one may be struggling to breathe – every moment is precious.

Additionally, they aim to assist anyone whose life is restricted by a breathing condition to be able to go about their day as normally as possible. So, they might enable a child with severe breathing difficulties to go on family or school outings; or supply a machine for an older patient, helping them get out of the home and engage more. They can also support terminally ill patient to be at home to spend their final days with loved ones.

There’s more here here

“Thank you so much for the deliveries – they are hugely appreciated Now, more than ever, they are needed to keep people out of hospital and give them care wherever we can provide it. We will be distributing to care homes and suitable venues and we will make sure they are put to good use” – a Doctor

“Just a line to say a “Big Thank You” for not only sourcing a very much needed nebuliser for me but for getting it to us so quickly! I’ve been using it 4 times a day since Thursday and can already feel a huge relief. Thanks to you I can now breathe easier and deeper without wheezing. No words can ever thank you enough, during this stressful time. You are amazing people. People like myself wouldn’t survive without you. Thank You” – a patient

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Multiple Sclerosis Therapy Centre Norfolk

We purchase a vital defibrillator providing independence and confidence for MS Centre users

Multiple Sclerosis Therapy Centre Norfolk aims to provide independence to all those with Multiple Sclerosis and all other neurological conditions.

The Axis Foundation’s donation of £1,500 will purchase a defibrillator for centre users: most have MS, are vulnerable or at risk. Whilst everyone benefits from the sessions here, purchasing a defibrillator will mean the centre can further fulfil their duty of care by minimising risk and increasing safety for users. Our grant will also provide training for staff in using the defibrillator.

“This Defib will make a huge difference to us, allowing vulnerable centre users feel confident in our care knowing there is a team and equipment available in the event of any emergency. This also makes the team at the centre feel confident that they can deal with possible situations and have the right equipment. We would like to say thank you too the Axis foundation for your support over the years” – Nick Petch, Volunteer Fundraiser

Our donations

This is our second donation to Multiple Sclerosis Therapy Centre Norfolk. In 2019 we donated £2,480 to help install a ramp entrance to the front of the centre which is housed in an old air traffic control tower.

More about Multiple Sclerosis Therapy Centre Norfolk

The centre offers  appropriate therapies and services including physiotherapy, yoga, Pilates, reflexology and podiatry to 400 users. There’s more about their work here 

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The Chartwell Children’s Cancer Trust

We help develop new app for cancer patients

The Axis Foundation donated £10,000 to help The Chartwell Children’s Cancer Trust develop a brand-new app, the first of its kind in the UK, designed and created to help young cancer patients, families and clinical care teams.

‘As a charity we a have a tireless commitment to the oncology communities we serve. This technology-driven healthcare solution represents a hugely exciting step forward in how cancer patients and families are supported. We are delighted that the Axis Foundation shares our values and has invested in the development of this innovative app which is set to make a huge impact across the country. I would like to share heart-felt thanks on behalf of the team at the Trust and the beneficiaries of this project” – Michael Douglas, Charity founder and Trustee

“The commencement of the development phase would not have been possible without your support and the
process is yielding fantastic results working in collaboration with patients, families, technology and clinical
specialists. We are so grateful to work with like-minded funders such as yourselves who share our commitment to
this cause” – Natalie Reilly, Trustee

Our App will include:

• Clinical information about specific cancer diagnoses, treatment, procedures
• Explanations about clinical care teams/ surroundings
• Practical tips, advice, do’s and don’ts for caring for young patients
• Real life testimonials from children/ families
• Links to physical/ digital support groups, charities, organisations
• Research opportunities, clinical trials, funding

Aggregating critical up-to-date clinical information the app gives young cancer patients, families and clinical care teams access to comprehensive, high quality, evidence-based education resources direct to a phone or tablet.

It will assist families with decision-making, advance preparation for treatment, orientation around processes and care pathways and connection to support networks and resources within and beyond the NHS.

The team creating the app comprises experts in technology and software development, clinical care and Childhood Cancer Research, educational content creators, videographers and animators all working in close collaboration with hospital Trusts and Children’s Cancer Research specialists.

More about The Chartwell Children’s Cancer Trust

The Chartwell Children’s Cancer Trust supports Paediatric Oncology communities and local Cancer and Leukaemia services across London and the South East. They work in collaboration with the NHS from Princess Royal University Hospital, Queen Elizabeth Hospital Woolwich to King’s College Hospital, Guy’s Hospital and Croydon University Hospital to make vital improvements to patient care. Their goal is to allay information overwhelm, alleviate stress and feelings of isolation, optimise patient experience and improve health outcomes for patients. There’s more here

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