News | SOFT UK

Against All Odds podcast series

Listen to our series of podcasts called “Against all odds”. It features stories from families whose children are not only surviving but thriving. Starting with Leo Andrew’s story who is responding well to the therapy he is receiving, despite having a condition so rare it doe...

Family story Lewis

Lewis is now 19 years old and lives a full life with friends, Xbox and aspirations for getting a job and living independently! You can read this honest account written by Mum, Helen Tarratt in the latest update of his story here: https://www.soft.org.uk/family-stories/lewis

Feedback For Weekend Event

Thank you for being part of our 30th anniversary weekend of content!We want to hear your feedback so we can keep improving our logistics and content.Please complete this survey and let us know your thoughts: https://forms.gle/KQFXqcKTc56imqbh9 It won’t take long, and all answers are anony...

Family story Anouk

It was only discovered when she was 4 days old that she had Trisomy 13. Mum, Claire goes on to explain: “Anouk was doing really well. At 2 months, we requested a second genetic testing of her skin cells, it confirmed that she was actually Trisomy 13 mosaic. It didn’t really change anythi...

Involving Women and Families to Shape New Role in Maternity Services

NHS England is developing a new role in maternity services to support parents and their families. We need people to join the group to work together online at 6 meetings between late August and mid-October. They are looking for women and families who:• Have a personal experience of maternity s...

Expectant Family Call August

Our next expectant family call is coming up on Wednesday 4th August. If you're currently expecting and would like to come and talk to other families and ask questions, then please let us know. Also, if you have a story to share or would be happy to come and talk with families starting...

SOFT UK Newsletter July

Hello and welcome to our SOFT UK, July Newsletter. We hope you're all keeping well during these tough and uncertain times, and that you're getting the chance to enjoy the sunshine.In this months newsletter we've got some incredible family stories to share with you, and more news about our upcoming 3...

Join Our Virtual Family Weekend

Registration is open! We want to warmly invite you to celebrate our 30th Anniversary with us in September, all from the comfort of your own home. Many of you will know SOFT UK has been running family days for years, providing a chance for families to meet others in our Trisomy 13 and Trisomy 18 co...

Spring 2021 Newsletter

Our Spring edition of our quarterly newsletter is out now! In this edition you will find: Our latest family stories Updates on work SOFT UK is doing with NHS England Information on NIPT (non-invasive prenatal testing) Fundraising stories Information on all of the above, plus updated informa...

Trisomy Awareness Month 2021 Newsletter

March is Trisomy Awareness Month, a special time for us at SOFT UK. We're focusing on raising awareness of Trisomy 13 and Trisomy 18, sharing familiy stories and providing insight into the charity and the people that make it what it is. Are you following us on social media to make sure you're not mi...

SOFT UK Now On Youtube

The SOFT UK YouTube channel offers a range of videos, from family stories, through to more in depth information about Trisomy 13 or Trisomy 18. We will be sharing more videos in the future, so be sure to subscribe to the channel so you don’t miss any of our amazing content we will be ...

SOFT UK Podcast Now Live

We are proud to launch a new series of podcasts, focused on the stories and experiences of familiesfacing and living with a diagnosis of Trisomy, including bereavement and ending a pregnancy, living withTrisomy and a dad’s perspective. This seven-part series is available on all major podcast...

New Trustee Becky Wirth

Welcome Becky Wirth who has joined SOFT UK as a trustee. A pleasure to have her join the SOFT UK family. Becky's daughter Heidi was diagnosed with Full Trisomy 18 when she was 14 weeks pregnant and was born two weeks before her due date in April 2020. Sadly, she only lived for 3 ½ ...

Welcome SOFT Support Volunteers

With the launch of the new Support line we have expanded our Support Volunteer team! Hannah O'Gallachoir, Chloe Jordan, Lisa Wright and Simone Adams as Trisomy parents themselves can relate and empthaise with anyone enquiring on their own journey and lend an empathetic ear. The SOFT UK...

New additions to SOFT UK

SOFT UK would like to welcome Shaun Dowdall (Engagement Officer) & Jenny McGibbon (Communications Officer). We are thrilled Shaun and Jenny are bringing all their experience and skills to SOFT UK - welcome both! To read more about them head over to https://www.soft.org.uk/Who-we-are&n...

SOFT Family Virtual Calls 2021

SOFT Family Virtual Calls 2021 During this lockdown period we want to try and support our families as much as we can virtually to ensure no one feels alone. We will be scheduling regular Family Zoom Calls throughout this year so please get in touch with sonia.sankoli@soft.org.uk i...

Pears Foundation Funding Granted

We are delighted to have been offered a grant from Pears Foundation and DCMS to support SOFT UK's engagement with families. This will allow us to increase our capacity to engage with families during lockdown and reach out to families who would otherwise receive regular support. The f...

Autumn Newsletter is Out Now

SOFT UK Autumn Newsletter Available Now! Welcome SOFT UK Family to our next edition of our newsletter. We are proud to say, during these troubling times we have maintained our services to families throughout the past few months and we continue to see very high demand for our help...

You’re Not Alone

You’re Not Alone- A Creative Collaboration for SOFT UK and Same but Different We have the great pleasure to announce that we are working on an exciting collaboration with Same but Different, a not-for-profit organisation that uses art forms including photography and film, to tell st...

New SOFT UK Volunteer!

Shout out to our latest Volunteer recruit! Tina van Ewyk has joined SOFT UK’s volunteer force as a proof reader. 'SOFT UK helped my family enormously in 1995 when my beloved nephew Riley was born with trisomy 13.' Read more on Tina and the rest of our fabulous volunteers https://w...

RAREFest 2020

RAREfest20: Global, virtual festival puts rare diseases into the spotlight! Despite the fact rare diseases affect one in seventeen people, those affected tell Cambridge Rare Disease Network they’ve been all but forgotten during the last six months of the COVID-19 pandemic. With this in mind, ...

Research Interview- Initiation of Paediatric Advance Care Planning

Calling all Parents! Research Interview: Exploring parents experience and perspectives of the initiation of paediatric advance care planning. Researcher Introduction? You are being invited to take part in this research study. Before you decide if you would like to take part, i...

Loss Books

As parents, we make every effort to shield our children from the pain of grieving and loss. Unfortunately, this is often not a privilege that parents of children with Trisomy are afforded as we grapple with a life changing diagnosis early in our child’s life. Familial loss of any sort ...

SOFT Summer Newsletter Out Now

SOFT Summer Newsletter 2020 Out Now! Welcome to the first edition of our new quarterly update for SOFT UK! Highlights you will find inside: Update on impact of COVID-19 from SOFT UK Family stories from our members Latest edition from the trisomy blog- Living with Cali...

The Prudential Ride London

UK Charities need your help! The Covid-19 pandemic has had a catastrophic effect on the UK’s charities, with the cancellation of thousands of fundraising events and the loss of billions in income. Many charities have had to reduce or stop services at a time when vulnerable members of society...

The CoIN Study

Are you the parent of a child aged 0-16 with a rare genetic and/or neurodevelopmental disorder? Can you help us understand the impact of Covid-19 on the wellbeing of families of children with rare genetic and neurodevelopmental disorders? If you are, we invite you to take part in a regular online ...

Jeans for Genes 14 to 20 September 2020

We are delighted to be involved in the UK Genetic Disorders Partnership Network again in 2020. Jeans for Genes Day is the highly successful annual fundraising event from Genetic Disorders UK. It turns a simple fundraising idea into an epic income generator for charities like SOFT UK, working...

COVID 19 Update for Trisomy Families

1 July 2020 Caring for vulnerable children The Coronavirus outbreak has created complex challenges for families caring for vulnerable children. Guidance, health systems and social supports differ between the four home nations Guidance specific to children has been very l...

A Fascinating Look at How Covid is Affecting Trisomy Families

An alien world Posted on May 5, 2020 by isabelsmum Sometimes that’s how it feels these days. Like we have woken up in a strange new world where nothing makes sense any more. It is May 5th, only a few weeks since I last wrote in total disbelief that nobody seemed to be shocked ...

SOFT UK Appoints new Operations Manager to shape support for UK Trisomy Families

SOFT UK is delighted to announce the appointment of our new Operations Manager Caroline Heap. Caroline's remit will be to work alongside the Board of Trustees to put our dreams to SOFT UK into practice. She will be responsible for the Operational Management of the charity, including all...

New Communications Officer for SOFT UK aims to raise awareness of the Trisomy Community

SOFT UK are delighted to welcome our new Communications Officer, Sonia Sankoli, into post with our organisation. Sonia's new remit includes modernising all our communications streams to better support SOFT Families and families who come to us seeking support. She will also aim to raise a...

SOFT UK Family Days 2020

In light of the continuing coronavirus outbreak, we have made the sad decision to cancel both our Scotland Family Day scheduled for 19th September 2020 and our Northern Ireland Family Day, originally scheduled for October 2020. Our primary objective is to act in the best interests of our families a...

SOFT UK celebrates Volunteers Week 2020

June 1st to 7th is Volunteers Week! The special week dedicated to recognising the contribution makes to agencies, business and charities across the UK. Volunteers Week is particularly important to SOFT UK, as almost all the work of the charity is done by volunteers, who share their skil...

Trisomy Families asked to contribute to OurCovidVoices

The aim of #OurCovidVoices is to be a first draft of the nation's #COVID 19 history, written by people with long-term health conditions. Living under #lockdown is tough for everyone. But for families affected by Trisomy it creates huge new challenges. Many of our families have told us of the huge s...

New Research Study looking for Adult Participants with Full Trisomy 13

Dr Amy Lebedoff is looking for participants for her study Survey of Adults with Full Trisomy 13. The Research is sponsored by Dr John Carey, a long-term Professional Adviser of SOFT UK and also SOFT USA. There are already 26 participant families signed up for the study, so this could be...

TwoPointSixChallenge Raise funds for SOFT UK

SOFT UK is excited to announce that we are joining the #TwoPointSixChallenge to help save the UK's charities! The Covid-19 Pandemic is having a financially catastrophic effect on UK charities, with fundraising events cancelled up and down the country and the potential future impact of a str...

Trisomy Researcher joins SOFT UK Professional Adviser Team

SOFT UK are absolutely delighted to welcome Deborah Bruns from the TRIS Project to the team as our newest Professional Adviser. Our Advisers are a team of specialist professionals who work with SOFT UK on a voluntary basis on a wide range of projects. They enable us to work alongside professi...

SOFT UK Events Covid 19 Update

SOFT UK regret to announce that we have taken the decision to cancel our Family Day on 30th May. In view of the developing picture of the spread of Coronavirus and the paramount need to protect our members, particularly those members who may be more at risk, we have decided against holding face to f...

SOFT UK Winter 2019 Newsletter

Better late than never. Apologies for the delay in getting our Winter 2019 Newsletter to you. If you have a spare minute, grab a cuppa and put your feet up. This issue is packed with latest SOFT News, family stories and incredible fundraising achievements. Click o...

SOFT UK Annual Awards 2020

SOFT UK is delighted to invite you to nominate for our 2020 Annual Awards. We award two prizes each year to professionals working within the UK who are taking those extra steps to provide exemplary care for families affected by Trisomy. Oustanding Clinical Care Award Recognising Healthcare ...

National Lottery Community Fund Award

Funding Received! We are delighted to announce that we have been awarded funds from the National Lottery Community Fund Northern Ireland, to cover the costs of our Northern Ireland Family Day in 2020. Our family days are a great opportunity to meet other families and catch up with latest new...

Communications Officer

We are Hiring! SOFT UK is looking for a self-motivated and talented Communications Officer to lead our communications function. In this position, you will be in charge of producing high-quality content that engages our members and builds recognition of SOFT UK and the conditions it supports.&...

New Resources for parents facing decisions during pregnancy

ARC, Antenatal Results & Choices ARC is a national charity which helps parents and healthcare professionals through antenatal screening and its consequences. They: Offer non-directive individualised information and support to parents who are making decisions around antenatal testing. Help pa...

New Information Leaflet for Professionals

SOFT UK has published its updated Information Leaflet for Professionals this week. In the past few years there have been some signficant research advances in the Trisomy world. There have been significant studies into the survival of children with both T13 and T18. There has also ...

Baby Loss Awareness Week

SOFT UK is proud to be a member of the Baby Loss Awareness Week Alliance 2019. From 9th-15th October we will remember all the babies lost during pregnancy, at birth and in the neonatal period. Sadly the majority of pregnancies affected by Trisomy 13 and Trisomy 18 still end in be...

Pre natal Screening Research

As part of his PhD research, Emyr Wile would like to obtain parents experiences of the NHS prenatal testing process in the past three years. He is looking to study the experiences of parents who received a low or high-chance result following combined/quadruple screening and who decided...

SOFT Northern Ireland Family Day 2019

On Saturday 5th October we were delighted to return to Northern Ireland, for the first time in 6 years, to spend the day with our families there. It has been some time since we have had a Northern Ireland Rep, so our Trustee Liz Egan spent the summer trying to make contact with families in t...

SOFT UK Family Meets

Families in the South West took advantage of the new SOFT UK Family Meetings to meet together in Bristol! Thankyou so much to Jay, Cali's mum for organisating the first of our local meetings. It was great to be able to meet up informally and spend some time together in a fun, accessible ...

Scotland Family Day 2019

The sun was shining for our annual Scottish Family Event on 14th September 2019. Ten families attended the event, including many of our long-term members, some returning families and one new family. We were sad to be missing some of our regular families this year and send best wishes to those ...

Family Day 2019

SOFT UK held its 2019 annual family day at the Marriott, Northampton on May 11, with Family Stories the chosen theme for this this year’s highly successful event. Starting with teas and coffees, the Family Day provided a great opportunity for families to meet up, catch up with latest news and...

SOFT UK Annual Awards Winners

This year we received many nominations for our Annual Awards scheme. The SOFT UK Annual Awards recognise the efforts of professionals working with families affected by Trisomy. The nominations sent to us were heartfelt thanks from families and as always, its very hard to choose between them. However...

Summer 2019 Newsletter

Our summer 2019 newsletter is here! Packed full of content from the results of our SOFT UK Research Project, to our Family Stories section and news from our Family Days! Its almost the weekend, grab yourselves a cuppa and put your feet up! &nb...

Research Project Results Are In

PHD Student, Helen Foster-Collins, undertook a piece of research to try to better understand what kind of support is required for families who are affected by Trisomy 13 or 18 from clinicians, SOFT UK and other support services. The project was carried out using qualit...

New Arrivals

SOFT UK welcomes new Rainbow Babies Sonia and Sandeep Sankoli welcomed Jovin on 31 st May, a long-awaited little brother for Dhian who had Trisomy 13. Sonia and Sandeep do an incredible amount of volunteering for SOFT UK, from fundraising to supporting other families. &n...

Making a Regular Donation to SOFT UK!

One of the things families ask us most often is how they can help SOFT UK! Many people want to give something back to SOFT UK after they have received information or support from us, or after we have supported a family member or friend. However life can be busy! Its not always possibl...

Language Matters

SOFT UK Trustee Alison Pearson blogs for Public Health England Alison was one of 2 mums asked by Public Health England Screening to talk about the importance of the language that health professionals use when communicating with parents and parents-to-be about conditions like Edwards’ sy...

Celebrating Volunteers Week 2019

SOFT UK would like to say a massive THANKYOU to all our Volunteers during Volunteers' Week 2019. Volunteers’ Week is our chance to celebrate the huge range of people who give their time to SOFT UK in so many ways. SOFT UK is a volunteer led charity and our volunteers are at the very he...

New SOFT UK Administrator

We would like to say a great big SOFT UK welcome to our new Project Administrator Marlene Graham. Many of you will know Marlene already as she has been a member of SOFT UK for many years. You may also have come into contact with her if you fundraise for SOFT UK as she manages our fundraising ...

Trisomy 18 Research Project

Researcher and long time friend of SOFT UK Meghan Linscott is undertaking a piece of research into the mental health impacts of parents of children with Trisomy 18. Trisomy 18 (also known as Edwards Syndrome) affects approximately 1 in every 1,500 pregnancies. Trisomy 18 causes physical and...

National Lottery Community Fund Award

We are absolutely delighted to announce that we have been awarded £7401 by the National Lottery Community Fund to develop our Volunteering scheme. Volunteers are at the heart of everything we do at SOFT UK. A member-led charity, we are governed by a voluntary Board of Trustees.&nb...

Trisomy Awareness Month 2019

March is Trisomy Awareness Month and in 2019 SOFT UK has exciting news to share! After many months of hard work, we are delighted to launch the FAMILY STORIES section of our website. For 25 years families have been telling us that what matters most to them is being able to connect with ...

Cali Rocks Rare Disease Day

Regular SOFT UK blogger Jay has shared her popular Living with Cali blog with the world for Rare Disease Day 2019. The 28th February is international Rare Disease Day, which focuses on highlighting the experiences of patients with Rare Conditions to the public, the medical community and to po...

World Birth Defects Day - March 3rd

SOFT UK joins nearly 100 national and global organizations in observing the fifth annual World Birth Defects Day on March 3. This international event was launched in 2015 to raise awareness of this serious global problem of birth defects and urge more surveillance, research, prevention, and c...

Winter Newsletter

I hope you are all surviving this wintry weather! If you're staying inside out of the cold, the Winter Newsletter will provide you with plenty to read with a hot cuppa! This edition there is plenty SOFT UK News as always. Read what we've been up to in the past six months and what we ar...

Genetic Alliance Guest Blog

This week SOFT UK is featured on Genetic Alliance UK's guest blog. Trustee Gareth Glendinning blogged about his experience taking part in training for health care professionals. As part of the rollout of NIPT testing in the NHS in England, Gareth took part in the making of a training video a...

Campaigning success for Together for Short Lives

Together for Short Lives are celebrating the success of their campaign to improve resources for Children's Palliative Care in England. Following a December announcement of an increase in the Children's Hospice Grant from £11 million to £25 million, giving it parity with funding fo...

SOFT UK Annual Awards 2019

SOFT UK is delighted to invite our members to once again nominate for our Annual Awards for 2019. We award two prizes each year, to professionals working within the UK who are taking those extra steps to provide exemplary care for families affected by Trisomy. Oustanding Clinical Car...

SOFT UK Christmas Appeal

Give a little back this Christmas....... Christmas is a time of giving, a time to celebrate our loved ones and a time to reflect amongst the chaos. This Christmas why not give a little back? And encourage your friends and family to do the same. Every year hundreds of families in the U...

Living with Cali Update

The next installment of our popular Blog 'Living with Cali' is up over at http://www.soft.org.uk/living-with-cali/enduring-admissions

SOFT UK Christmas Cards

We have a small number of packs of our popular SOFT UK Christmas Cards left over from last year! Our Christmas cards were designed by SOFT UK Families in 2017. They come in packs of 10 assorted cards. Suggested donation is £5 plus a postage charge, which will be calculated depending ...

APPG Children who need Palliative Care Report

Ministers must meet their commitment to dying children, MPs report says Together for Short Lives Press Release 21st October 2018 England’s most vulnerable children are not able to access the full range of care and support that the government has committed to, a new report by a cross-pa...

SOFT UK Race Team Announcement

SOFT UK announce successful candidate for VirginMoney London Marathon 2019 SOFT UK were fantastically lucky to secure a Charity Ballot Place for the VirginMoney London Marathon 2019. We had our highest ever number of applications for the place. We were incredibly touched by many of the ...

Scotland Family Day 2018

On Saturday 29th September, Trustee and Scotland Coordinator Liz Egan welcomed our Scottish members to the Glynnhill Hotel in Renfrew. Our Family Days are an opportunity for families to create a support network with other families affected by ...

SOFT UK & Jeans for Genes

SOFT UK Trustee Alison Pearson spoke to Heart Radio, to publicise the work of SOFT UK, as part of the annual Jeans for Genes campaign. To read her full interview visit: https://www.heart.co.uk/exeter/news/local/devon-mum-wants-more-awareness/

Genetic Alliance UK Conference

SOFT UK Chair Jan Fowler and Trustee Alison Pearson took the floor at the Genetic Alliance UK annual conference on 25th September. The conference brings together professionals from all sectors working with genetic conditions....

World Birth Defects Day 2019

SOFT UK has signed up as a partner to World Birth Defects Day 2019. World Birth Defects day has been set up by an array of international agency partners, to encourage improve surveillance of Birth Defects. Their belief is that a lack of reliable statistical data on rare birth defects prevents...

Summer Newsletter

After the longest wait in history, the SOFT UK Newsletter is finally here! Its absolutely packed full of content this edition, so please give it a read. I would like to say a huge thankyou to all the contributor's this edition, many of whom have waited patiently while I learned the ropes of my new...

Jeans for Genes Day 20 September 2018

Jeans for Genes Day is the highly successful annual fundraising event from Genetic Disorders UK. It turns a simple fundraising idea into an epic income generator for charities like SOFT UK, working with families affected by genetic conditions! Jeans for Genes Day can be run in any work...

SOFT UK Training for Professionals

SOFT UK Trustee John Capper has been working with the Chesterfield Royal Hospital to provide training for professionals working in their Antenatal Services. In July he gave a presentation to a group of obstetricians, paediatricians, midwives sonographers and other maternity staff. John p...

SOFT UK Professional Awards

Every year SOFT UK present awards to professionals for providing Outstanding Clinical Care to families affected by Trisomy 13 or 18. This week Chris Rose, Founding Trustee, travelled to Wales to present this award to midwife Kathryn Hennessey. Kathryn, who works as a midwife at the Royal Gla...

Scottish Family Day 2017

We started the day with tea/coffee and our usual catch up whilst the children settled into the crèche. We are so lucky to have the same crèche and workers every year. They all know our children so well and the children really look forward to spending the day with them all. ...

SOFT Newsletter Winter 2017

Welcome to the SOFT UK Winter Newsletter. Due to circumstances beyond our control, we are unable to offer our newsletter in it's usual format. We wanted to be able to give you something, so rather than not have a newsletter at all, we have worked exceptionally hard this week to create a short, onlne...

RAISE FREE FUNDS FOR SOFT WHILST SHOPPING ONLINE!

HO HO HO! #Christmas is on its way so get shopping, booking or ordering online @GiveasyouLive and start piling up those free funds for us. SHOP NOW!

New Volunteer Role!

HELP REQUIRED!Are you a student or budding enthusiast with website design experience/knowledge? Our beautiful new website is live but still needs refining! We would love to hear from anyone who could spend a bit of time helping with the development of our new website. If this is you, or you know som...