Friday 27th September 2019 : 19:00 - 22:00

Parents Lucy and Simon Pond brought extra festive cheer to young patients and their families at the Royal Alexandra Children’s Hospital (the Alex) in Brighton at Christmas by providing special festive hampers. In memory of their son Aidan, Lucy and Simon set up Aidan’s Christmas Dinner Project and we are very proud to have supported the cause for the last two years, providing festive dinner kits which were delivered to families in the hospital on Christmas Eve. Lucy has been kind enough to write a special blog post about Aidan and the Christmas Dinner Project – here’s her story… “In 2013 we spent Christmas as a family at the Alex. Our little boy Aidan, aged 19 months, was terminally ill with a rare genetic disease call Mitochondrial Disease and he needed a ventilator to stay alive. We knew this would be our last Christmas with our beautiful, brave little boy, and we had to stay with him around the clock as he could not manage a few hours without his ventilator. The dedicated children’s hospital staff are amazing at Christmas and we’ll never forget the warmth of the wonderful nurses, along with a visit from Father Christmas on the ward. Alas, due to logistical issues, a Christmas dinner was not provided for families unfortunate enough to have a sick child in hospital. Fortunately my mum was able to get to Asda, battled the queues and amazingly cobbled together a lunch in the Ronald Macdonald House (home from home accommodation located opposite the Alex) kitchen. Aidan passed away at the Alex on 1st March 2014, and in his memory, it was our overwhelming aim to provide funding of a Christmas dinner at the Alex for the future. We felt this would leave a legacy for Aidan and the brilliant nurses who cared for him. In the summer of 2014, we met with the head of nursing at the Alex, along with Rockinghorse Children’s Charity, to talk about our experience. We came up with the idea of a Christmas Dinner Kit, containing everything a family needs to make special meal just by heating it up – the Aidan’s Christmas Dinner Project was born. We immediately started fundraising and to date, we have raised over £6,000. So far, this has enabled us to provide 40 Christmas Dinner kits in 2014, and 55 kits in 2015, which included families with sick babies being cared for in the neighbouring Trevor Mann Baby Unit. We know that the wards try to get as many children home at Christmas as possible, and this might mean getting discharged Christmas Eve night or even Christmas day morning. For this reason, the kit is transportable and families can also enjoy it at home. Some of the items included in the hampers are; peeled and chopped potatoes and seasonal vegetables, a smoked chicken (which can be eaten hot or cold), stuffing, pigs in blankets, ready to heat gourmet gravy, a Harvey’s Brewery Christmas Pudding, plus napkins and crackers. We also include a gift for mums and dads (this was important because the children receive so many presents, but parents are often forgotten about). There is also a tree decoration to remember Aidan by, hand made by our friends and family. For Christmas 2015, we also had a wonderful gesture from the Jones family (pictured above), who gave up their Christmas Day to cook all the dinners for families who could not leave their child to cook it themselves. Clare Jones and her family did a superb job of providing approximately 30 cooked and plated dinners, and Clare had this to say about her family’s very unique Christmas Day: “My husband, two kids and myself had such a great day getting the Christmas lunches ready for those at the Alex. We were so warmly welcomed by the staff, parents and patients, and the hampers were a delight to cook, very easy and delicious and so full of goodies! When we arrived, I met a few parents before getting to grips with the oven and kitchen facilities. Meanwhile, my husband and children got the Christmas dinner orders. I couldn’t have been prouder of my children who quickly worked out what to do, and by the end of the day they were running around the wards, delivering puddings and collecting plates – I burst with pride thinking about it. By the time the last plate was washed and our bags were packed, I felt a real sense of achievement. One of my main aims was to make Christmas Day feel special to the patients and parents and judging by the lovely feedback we received, I think we did that.  We left mid-afternoon and so had plenty of the day left to enjoy Christmas with our families. The whole experience was a delight from start to finish and will be something that I will never forget, an opportunity that I am very grateful for my family and I to have received. Thank you to everyone who was so brilliant to us on Christmas Day!” Simon and I are so proud of this project. To think that two years ago, there was no option for families to have Christmas Dinner if they were in hospital with their child. We would also like to thank the volunteers sourced by Rockinghorse who helped make up the 55 hampers at Middle Farm (our sponsor). This included packing them, wrapping them and driving them to the hospital on Christmas Eve. We are eternally grateful to Louise at Rockinghorse, who did a fantastic job of finding a sponsor for the kits, and supports our project whole heartedly. In addition a special thanks should be given to Caroline at Middle Farm, Lewes, who agreed to provide the hampers for not only this year but every year. What has touched me the most, is that in between Christmas 2015 and New Year, a number of donations were pledged by families who had received a hamper. They were in a situation they never dreamed of being in, and yet they were so grateful to receive a kit, they donated to help other people who will sadly find themselves in a similar situation this year. Together with the support of Rockinghorse and Middle Farm, we plan to make the project bigger and better each year – and what a legacy for Aidan, our very special little boy. For more information about the project, or to make a donation, please visit: www.justgiving.com/aidanschristmasdinnerproject2016 Lucy, Simon and Evie Pond

Saturday 28th September 2019 : 08:00 - 11:00

Since the Charity was established in  2001 by Dame Vera Lynn, the Forces Sweetheart, we have helped more than 600 families from across the Southeast who have with children cerebral palsy and other motor learning impairments. Each year in the UK, 1,800 children are born with cerebral palsy. Over the last year we have provided 1,200 hours of hands-on support to our families and 275 hours of Outreach support. Cerebral Palsy is a physical disability that affects movement, balance and posture as well as cognitive, social and communication skills and is often caused by an injury to the brain. Early intervention is important to enable children to learn and develop physically, socially and emotionally, forming the bedrock of the independence that they can achieve later in life. Our story began in late 2000 with the announcement by the national charity Scope, that it would no longer be able to fund its network of School for Parents, facilities providing early intervention services based on the principles of Conductive Education to support parents in raising a pre-school aged child with cerebral palsy or other neurological condition. Understanding the importance of early intervention, and determined not to see the School For Parents at Ingfield Manor, West Sussex, close, Dame Vera together with her friends launched the 'Bluebird Appeal' and raised enough awareness and considerable funds to save the school. If it were not for her efforts, so many children would have lost out on an amazing start. Dame Vera Lynn Children's Charity continued to provide for the early intervention service at Ingfield Manor in collaboration with Scope, until late 2016, when the Charity took a number of decisions to ensure a more sustainable future.  This included formally terminating its collaboration with Scope at Ingfield Manor. In 2017, we embarked on an exciting new chapter in our history when we moved to a new home in Cuckfield, West Sussex, where we are able to continue offering our early intervention services as well as providing more services, activities and help to our families. The Charity receives no statutory funding and is entirely reliant upon the donations it receives from individuals, community groups, companies and charitable trusts. Dame Vera, our President, said:

Saturday 28th September: 2019 : 17:45 - 20:45

“The foodbank was there when we really needed it, it was an absolute lifeline.” We don’t think anyone in our community should have to face going hungry. That’s why we provide three days’ nutritionally balanced emergency food and support to local people who are referred to us in crisis. We are part of a nationwide network of foodbanks, supported by The Trussell Trust, working to combat poverty and hunger across the UK.

Saturday 28th September 2019 : 14:30 - 17:30

Established in 1949, Eastbourne & District Mencap has been supporting local people with learning disabilities and their families for over 60 years. We provide a range of services from 24 hour residential care to day opportunities and family services. We are a local registered charity supported by the kind and generous people of Eastbourne. We are delighted to have more than 100 members who include people with learning disabilities, their families and those dedicated to supporting and improving the lives of people with learning disabilities. Our aim is to support people with learning disabilities, as valued members of society, to live a full and fulfilling life, with equal rights, responsibilities and opportunities. Our work is managed by a Board of Trustees who, together with 90 experienced and qualified staff and some volunteers, are dedicated to providing first class services. We work very closely with our partner agencies in Health and Social Care, continually improving and learning to ensure our services continue to be modern and effective.

Who do we Support?

There are many different types of learning disability. Some people with a mild learning disability do not need a lot of support in their lives. Others may need support with everyday things like going shopping, making choices or filling out forms. Some people may need extra support, especially if they also have a physical or sensory disability or have mental health problems. For more information about learning disabilities click here. We also recognise that the family of a person with a learning disability are very important to them. Services provided by any organisation are no substitute for family care and support which is why we encourage the involvement of families and friends of our residents and those in the community who use our services.

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We provide this support in a number of ways

• We provide information on available services and how to access them
• We are always ready to listen to carers and family members who need someone to talk to in confidence
• We signpost people to appropriate agencies i.e. voluntary organisations and statutory bodies
• We provide social and leisure opportunities at our day services
• We hold occasional weekend and evening special events i.e. clubs, parties, discos, etc.

Click here to find out more.

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Legal details about our organisation

Eastbourne and District Mencap Limited is a company limited by guarantee Registered in England and Wales Company registration number 6182982 Registered Charity number 1125686 Registered Office: 113 Pevensey Road, Eastbourne, BN22 8AD. (Affiliated to Royal Mencap Society)

Friday 27th September 2019 : 19:00 - 22:00

We help families in Sussex to overcome their difficulties and prevent crisis. We support families struggling with issues such as poverty, ill health, learning difficulties, bereavement, family break-up and domestic abuse.

Saturday 28th September 2019 : 21:00 - 00:00

Friday 27th September 2019 : 22:15 - 01:15

The PTA is made up of the parents and teachers of children at Lindfield Primary Academy. Our main aim is to help enhance the children's experience at the Academy by raising funds for equipment, environments and other extras (that the Academy may not be able to fund with its budget) to make Lindfield Primary the best it can be for our children and future generations. We are very proud to be included in the top 5% of PTAs in the UK in terms of fundraising. Over the 2017/18 academic year we raised £32,000 for the Academy and have funded a new pond area, booster groups, climbing wall grips, playground equipment, benches and floor markings, author visits, sensory area, forest school container, maths subscription and lots of new books to name but a few. See our Fundraising page to see more of the things we’ve helped to fund and what we’ve raised at our Events. Our secondary aim is create, boost and enjoy a real community feeling for parents, teachers and the children. We aim to make our events as inclusive as possible so that they attract attention from the wider community as a whole and not just from within the school. Our events can range from specific fund raisers to more social events where you can meet other parents. We’d like to think we are a social bunch and are always ready to welcome new committee members or people who are willing to help out in any way. Once your child starts at Lindfield you become a member of the PTA. If you’d like to be more involved by becoming a committee member (and be able to vote on PTA decisions, including how the money we raise is used to fund projects) or offer to help in any way, please contact our Co-Chairs:

• Anna Ashley
• Rebecca Downie
• lindfield.pta@gmail.com

You can also follow us on: Lindfield Primary School PTA @Lindfield_PTA lindfield_pta We hold 2/3 PTA Committee meetings a term. The next committee meeting date will be posted on Facebook, the PTA blackboards at the Academy and on the PTA notice board in the car park. They are usually held on a Tuesday and start at 8pm in the Community Room at the School. It’s always nice to see new faces so please feel free to come along and join us, everyone is welcome.

Sunday 29th September 2019 : 03:30 - 06:30

PTEN Hamartoma Tumour Syndrome (PHTS, often shortened to PTEN) is a rare genetic condition. It is thought to affect around 200-300 people in the UK, although the number of patients identified is about 150 (as of July 2017). It is caused by an alteration of the genetic code in a gene called PTEN. This is an abbreviation of its full name: Phosphatase And Tensin Homolog. Alterations are sometimes passed down from parent to child, and sometimes the alteration is spontaneous (de novo).   Sometimes referred to by its older classifications of Cowden Syndrome (CS) or Bannayan Riley Ruvulcaba Syndrome (BRRS), these syndromes (collection of symptoms) were first identified in the years before the development of genetic testing. Following the discovery that these different conditions were caused by the same gene, they were amalgamated under one name; PHTS or PTEN Hamartoma Tumour Syndrome.   There is a wide range of symptoms associated with the condition which can vary considerably in severity. When recognised in children it can account for issues such as a big head (macrocephaly) , developmental delay, and autism. There is an increased risk of certain types of cancer in adults. People with the condition may have other problems affecting their skin including unusual pigmentation and wart-like lesions. Some people have fatty lumps called lipomas or overgrowth of blood vessels (arterio-venous malformations).   If you are waiting for a diagnosis, are newly diagnosed, or just have suspicions, please take a look at our “New to PHTS” page. More detailed information can be found on our “On Diagnosis” page.   There is no current treatment or cure. Patients are managed according to their symptoms. Doctors will discuss appropriate cancer surveillance for each person. Research is ongoing to try to understand the variability and to try to identify treatments and therapies. More information can be found on the PTEN Research Foundation website – www.ptenresearch.org.   Welcome to PTENUKI, the PTEN UK and Ireland Patient Group. The first PTEN / PHTS patient meeting in the UK was in Winchester in September 2015, and throughout 2016 a number of additional meetings and conversations led to the coming together of several patients, family members and professionals, and to the registering of the patient group as a UK based charity (Registered Charity: 1172205) on 22nd March 2017. Our Vision The patient group’s purpose is to improve the lives of patients, parents and carers of all ages, in the United Kingdom and Ireland, who are affected by PTEN genetic alterations, PTEN Hamartoma Tumour Syndrome (PHTS), Cowden Syndrome (CS), or Bannayan-Riley-Ruvalcaba Syndrome (BRRS) through better patient support, increased awareness, more accurate and accessible information, earlier diagnosis and intervention, greater research into treatment and prevention, and improved coordination of care. Our Official Charitable Objects 1. Patient Support – To promote and protect the health of persons affected by PTEN Hamartoma Tumour Syndrome and related syndromes in the UK and Ireland by the provision of support, information and practical advice for such persons, their families and carers. 2. Improved Healthcare – To improve the healthcare of persons affected by PTEN Hamartoma Tumour Syndrome and related syndromes in the UK and Ireland through advancing the education and awareness of medical professionals and the general public 3. Research – To support and promote research, especially but not exclusively into the diagnosis, treatment and prevention of PTEN Hamartoma Tumour Syndrome and related syndromes in the UK and Ireland    

Friday 27th September 2019 : 19:00 - 22:00

Sands is the stillbirth and neonatal death charity. We operate throughout the UK, supporting anyone affected by the death of a baby, working to improve the care bereaved parents receive, and promoting research to reduce the loss of babies’ lives.  

Saturday 28th September 2019 : 01:30 - 04:30

We’re a local charity with a big ambition: to help everyone face death informed, supported and pain free. Providing expert hospice care, we’re there for people in West Sussex and East Surrey when life comes full circle. We also pioneer standards in end of life care through collaboration, research and training, reaching even more people facing death and bereavement.

What We Do

We’re there for people in Sussex and East Surrey, with expert hospice care, when and where they need us most. Our skilled teams are on hand to support people living with terminal illness in their homes, at our Day Hospice and on our wards.

Tailored care

It could be a bath, a favourite meal, or helping someone manage their pain. For us, hospice care is whatever our patients and those closest to them need it to be. It’s different for everyone, and we empower our patients to make their own decisions whenever they can. We also give emotional, spiritual and welfare support to anyone affected by death and bereavement.

Pioneering standards

St Catherine’s Hospice was established in 1983 and we are experts in end of life care. We’re the leading provider of hospice care in Sussex and East Surrey, helping around 2,100 terminally ill people, their family members, friends, and carers each year. We believe that we are better and stronger together and so also offer specialist training, take part in research and work with the wider sector to pioneer standards in palliative care and support.

Community generosity

Our care is only possible thanks to the generosity of our local community who donate to and volunteer with us. Each year around £7.5 million is donated by our supporters and more than 1,000 people volunteer to help give our tailored care when people need us most. Community support means we’re there when life comes full circle. To find out how you can be part of our life-changing work, visit our support us pages.

Friday 27th September 2019 : 22:15 - 01:15

Our mission is to transform end of life care for the people of Eastbourne, Seaford, Hailsham, Uckfield, Heathfield and all the points in between.

We serve a population of 235,000 people covering an area of around 300 square miles. Our expert teams work to help people to live well until the end of their lives and to support their family and friends. We provide care in our 20-bed Inpatient Unit, through our Wellbeing service and, increasingly, to families in their own homes.   St Wilfrid's Hospice was opened in 1982 in Mill Gap Road in Eastbourne when outpatients visited once a week for tea. In 1983 the hospice accepted its first inpatients and in 2013 it moved to the purpose-built building on Broadwater Way, equipped with a 20-bed Inpatient Unit and Wellbeing Centre. We continue to provide specialist care for people with any progressive, advanced life-limiting illness. Referrals are made by the patient's GP or other healthcare professionals and care is delivered by a team that includes consultants in palliative medicine, specialist nurses, occupational therapists, physiotherapists, counsellors and social workers. Our mission over the next five years is to continue to reach out and transform end of life care for more people in our catchment area in a range of local settings through our Closer to You campaign. We need your support to do this. We rely on the generous support of our community to help provide this free care to our patients and their families. We want to see a community where people talk openly about dying, live well until the end of their life and where nobody dies alone, afraid or in pain.   

Saturday 28th September 2019 : 04:45 - 07:45

A group of Sussex-based fitness instructors are joining forces to raise a whopping £40,000 for local charities this autumn and are challenging YOU to help them meet the ambitious target. Swoove (Sing, Whoop, Move) instructors and enthusiasts from around the area will embark on a 40-hour Swoovathon at Scaynes Hill Millennium Centre, starting at 7pm on Friday 27^th September and finishing at 2pm on Sunday 29^th September 2019. Swoove Fitness founder and creative director Esther Featherstone, who turned 40 in April, wants to celebrate by hosting the 40-hour event, with the help of as many people as possible. She says: “Swoove Aid has already raised £64,000 for local charities up and down the country. Another amazing £40,000 would boost the awareness, profile and funds of a further 40 local, small charities, many of which don’t have huge fund-raising manpower and can slip under the radar.  “Those taking part are encouraged to challenge themselves and Swoove for at least 3 hours across the marathon…  or any length of time – even 40 hours if they feel they can do it.”  The entry charge to the event is £25, with participants allowed to Swoove for as long as they like.    

Saturday 28th September 2019 : 01:30 - 04:30

About Us

We are The Starr Trust, registered Charity no. 1127497, formed to support young people to fulfill their potential. We are an independent, family run charity. Our income comes entirely from community fundraising and events, and donations from generous companies and individuals.

Our Mission

To support young people aged 10 –18 to fulfil their potential through sports, arts and education, by giving a helping hand to achieve their goals at a time when they really need it. We provide:

• financial grants up to £5000 for young people in need living in the BN post code area of the UK (Edward Starr Awards)
• training and development of skills
• connections and mentoring

We do this through local fundraising, events, creating local networks of mentors and other interested professionals, providing opportunities for training and skills sharing and connecting communities locally and around the world. We aim to encourage independent thinking, entrepreneurship and a social conscience in young people through all our activities.

Our Vision

We believe in a world in which young people are supported to achieve their fullest potential; where they flourish as individuals whilst making a positive contribution to their community, and in turn are recognised for their achievements.