Alex TLC support services have a wealth of experience and knowledge to help you through all aspects of living with a leukodystrophy whether you are newly diagnosed or were diagnosed a while ago. They are here to support you, your family and friends, through practical and emotional support as well as accurate medically checked information relating to the many types of leukodystrophy.

They provide means tested grants to help access care, equipment or therapy not available through statutory services, including support during Bone Marrow Transplant or Gene Therapy.

https://www.alextlc.org/

Ataxia provides information and support for people living with Ataxia (an umbrella term for a group of neurological disorders that affect balance, coordination and speech).

There are also a number of grants available that are listed on their website

https://www.ataxia.org.uk/

Buttercup Children’s Trust helps seriously ill children and their families to overcome the pressures of dealing with disabilities and life hindering illnesses.

They can provide assistance with such things as vital medical equipment, vital sensory equipment in addition to travel costs and respite to name a few.

They also provide support and advice.

http://www.buttercupchildrenstrust.org.uk/

"What we do is very simple: pay for things that we would want all children and young people to have but their parent or carers cannot otherwise afford."

They provide support designed to improve emotional, educational and social outcomes through our Chances for Children grants and, for some children whose home environment is disruptive and chaotic, grants which allow them to go to boarding school.

They can offer grants upto £2000 and items they can fund include:

- Items and activities to support learning and development such as laptops, books, 12 months of broadband, educational toys, tuition, etc.

- Clothing and school uniforms

- Social, sporting and leisure activities

- Family activities

- Items for children/young people’s bedrooms

- Other household items that are not available from sources such as Emergency Essentials or Local Authority welfare schemes, etc.

https://buttleuk.org/

Carers Trust is a major charity for, with and about carers. They work to improve support, services and recognition for anyone living with the challenges of caring, unpaid, for a family member or friend who is ill, frail, disabled or has mental health or addiction problems.

They have a national network of local support partners which you can search on their website to find appropriate support in your area.

If you are a carer you may be able to receive a Carers Fund grant as part of a package of support from your local Carers Trust Network Partner.

https://carers.org/

The Caring Cancer Trust provide special Youth2Go Healing Holidays of Adventure and Create2Go Art and Music workshops for Children recovering from Cancer, enabling them to regain their self-confidence and re-ignite their passion for life after the trauma of their illness and lengthy treatment.

They also provide in-patient support at hospital paediatric oncology units in southern England, providing comforts and amenities for children suffering from Cancer, and support for their caring parents and siblings.

https://stopcancer.health/

The Child Brain Injury Trust is a charity that offers support (including legal) and advice to children living with an acquired brain injury, as well as supporting their carers and siblings.

They also operate a small grants program that awards up to £125 towards a social activity for siblings and children with a ABI.

https://childbraininjurytrust.org.uk/

The Cystic Fibrosis trust supports people living with Cystic Fibrosis. Their website provides information about the condition and information about the support they provide.

They provide a range of welfare grants to help in times of financial need. These include grants for emergencies, transplant assessments, health and wellbeing, holidays and breaks, home care, education and prescription pre-payment certificates.

https://www.cysticfibrosis.org.uk/

Disability Grants is a website that lists a massive number of grants that are available throughout the UK. It also has various other information and resources about various disabilities and a map of holiday caravans that are owned by charities around the UK.

https://www.disability-grants.org/holiday-caravans-for-the-disabled.html

https://www.disability-grants.org/

Family Action transforms lives by providing practical, emotional and financial support to those who are experiencing poverty, disadvantage and social isolation across the country. Their website features a search function to help you find local support services that they offer.

As well as the support services they provide, they also offer a small grants service for Welfare or Educational purposes.

https://www.family-action.org.uk/

Is a charity that aims to improve the lives of low-income families raising disabled or seriously ill children and young people. They offer grants for short breaks, essential items and services (eg washing machines, toys, furniture, tablets / computers, bedding, clothing etc) and their website also has a series of guides on various types of support that is available.

To be able to apply for a grant you must meet certain criteria, which are basically that your child must have a high level of additional support needs arising from a long term disabling condition or a serious or life limiting illness and you must be in receipt of a means tested benefit (eg Universal Credit).

https://www.familyfund.org.uk/

Honeypot is charity that provides support for young carers in the 5-12 age range. Their early-intervention, Wrap-Round service is designed to provide relief, protect mental health, and develop social confidence, and delivered in safe, nurturing environment. Each year, they aim to offer places to over 2,500 young carers and vulnerable children across the UK through residential breaks, and a range of digital and face-to-face support services.

As part of their Wrap-Rround service, they also provide small grants to young carers from deprived backgrounds for life’s essential items, such as a new washing machine or school materials.

https://www.honeypot.org.uk/

Lennox Children's Cancer fund supports children who are living with cancer and their families. They offer emotional support, practical support and advice on things like financial entitlements and treatment procedures, respite breaks in one of their two holiday homes in the New Forest and financial support through a grant scheme (at the time of writing their grant scheme is currently on hold).

https://www.lennoxccf.org.uk/

The National Deaf Children's Society offer a wide range of information and support on their website, a telephone helpline and they organise events for parents, carers, families and young people. They also offer a "Technology Test Drive" which is an opportunity to borrow a wide range of equipment for up to 30 days to see what works for you (there is information about assistive technology on their website).

Inclusion Grants are small grants (up to £150) to help deaf children and young people get involved in events and activities, groups and clubs. Examples include after-school clubs, BSL courses and swimming lessons. They can also be put towards things a young person needs to take part, such as football kit. On some occasions they may be able to reimburse travel costs.

https://www.ndcs.org.uk/

The Royal National Children's SpringBoard Foundation (RNCSF) works to bring the transformational opportunities offered by the UK's leading schools to the young people who will benefit from them the most. They allow children who would otherwise be unable, to attend leading independent schools by funding bursaries.

https://www.royalspringboard.org.uk/

Sunny Days Children's Fund is a national registered charity which raises funds to help children under the age of 18 years with a wide range of adverse medical conditions including Leukaemia, Cerebral Palsy, the Deaf and Blind, Terminal Illnesses, and all other life hindering conditions.

They make small grants to enable to help children and their families, whether it be for day trips, medical equipment, respite, hospital travel, or sadly making children's remaining time as comfortable as possible, to include where achievable, children's last wishes.

They also have two holiday homes in Clacton-on-Sea in Essex and offer free week long holidays to those that meet their criteria.

http://www.sunnydaysfund.org.uk/

Through a nationwide network of WellChild Nurses, home and garden transformation projects and family information, training and support programmes, WellChild makes it possible for children and young people with complex health needs to be cared for at home instead of hospital, wherever possible.

https://www.wellchild.org.uk/

Young Lives vs Cancer's care teams provide day-to-day support for each child, young person and family, from information and guidance to clinical care and specialist play during treatment.

They provide grants and help them get the benefits and other support you’re entitled to. They also help liaise with young people’s employers and sort out housing issues to keep families together, because day-to-day life doesn’t stop when you have cancer.

Their nursing teams can provide personal care and support at home, or arrange for treatment to be given closer to home. They also have Young Lives vs Cancer Homes from Home close to hospitals, where families can stay during treatment for free.

https://www.younglivesvscancer.org.uk/