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SOFT UK
United Kingdom
Приєднався 20 кві 2016
SOFT UK is the national support organisation for families affected by Patau's Syndrome (Trisomy 13) and Edwards' Syndrome (Trisomy 18). Patau’s and Edwards’ Syndromes cause a variety of developmental and health difficulties for affected individuals. Both conditions are considered to be life-limiting, meaning they may affect how long a baby can be expected to survive. SOFT UK’s mission is to ensure families can now access information and support when they need it. SOFT UK provides up-to-date, relevant information, in a way that is accessible to both families and the professionals working with them. Our information is evidence-based and prepared in collaboration with our professional advisers. We support families at every stage of their journey; through pregnancy, when caring, after a loss, expecting a new baby and beyond. There are a range of ways to access our support; through our publications, our befriending service, our social media pages or our Family Events. www.soft.org.uk
In Conversation With Together For Short Lives
In todays episode we are talking with Dr Helena Dunbar, Director of Service Development and Improvement at Together For Short Lives.
Take a peak behind the scenes and find out a little bit more about the projects and initiatives Together For Short Lives are working on.
For Together For Short Lives:
www.togetherforshortlives.org.uk/
For SOFT UK:
Reach out at contact@soft.org.uk
For support, contact support@soft.org.uk
To find out more, visit www.soft.org.uk
Take a peak behind the scenes and find out a little bit more about the projects and initiatives Together For Short Lives are working on.
For Together For Short Lives:
www.togetherforshortlives.org.uk/
For SOFT UK:
Reach out at contact@soft.org.uk
For support, contact support@soft.org.uk
To find out more, visit www.soft.org.uk
Переглядів: 67
Відео
SOFT UK Scotland Family Day: Moments of Reflection
Переглядів 9Рік тому
In this session, Laura will be leading our remembrance ceremony, joined by some fantastic art created by the children who attended the day. The SOFT UK Family day was made possible by the National Lottery Community Fund who kindly sponsored the event.
SOFT UK Scotland Family Day: An Update on Ayla
Переглядів 17Рік тому
In this session Caroline Johnston will give us an update on Ayla. The SOFT UK Family day was made possible by the National Lottery Community Fund who kindly sponsored the event.
SOFT UK Scotland Family Day: A Time Of Reflection
Переглядів 6Рік тому
In this session Carolyn and Robin Cockburn will give us an update now Ellie has turned 18 and moved into her own accommodation The SOFT UK Family day was made possible by the National Lottery Community Fund who kindly sponsored the event.
SOFT UK Scotland Family Day: Una MacFadyen and Nadia Bowley
Переглядів 15Рік тому
In this session we hear from Una MacFadyen and Nadia Bowley who will be updating us on the projects they are working on. The SOFT UK Family day was made possible by the National Lottery Community Fund who kindly sponsored the event.
SOFT UK Scotland Family Day: An update of the work of ARC in Scotland
Переглядів 4Рік тому
In this session we are delighted to welcome Karen McIntosh, Scottish Co-ordinator, Antenatal Results & Choices - ARC The SOFT UK Family day was made possible by the National Lottery Community Fund who kindly sponsored the event. You can find out more about ARC here: www.arc-uk.org/
SOFT UK Scotland Family Day: Introduction
Переглядів 16Рік тому
In this session members from SOFT UK will be introducing the day and giving an update on SOFT UK from the past 18 months. You'll hear from our Trustees, Liz Egan and Laura Petrie, our Charity Director, Shaun Dowdall, and our Trisomy Advocate, Sarah Bowell. The SOFT UK Family day was made possible by the National Lottery Community Fund who kindly sponsored the event.
Baby Loss Awareness Week 2023: In Conversation with Kate Sonley
Переглядів 24Рік тому
In support of Baby Loss Awareness Week 2023 we are talking with Kate Sonley, mummy to Amber. Kate bravely talks about her story, sharing the ins and outs of her journey. Reach out at contact@soft.org.uk For support, contact support@soft.org.uk To find out more, visit www.soft.org.uk
From Past To Present: Reflecting on Demi's Trisomy 18 Journey
Переглядів 34Рік тому
Ahead of the annual Scottish Family Day we interviewed one of our longstanding parents Demi Powell who shared her story about Connor, her baby boy who was diagnosed with Trisomy 18, 22 years ago. It was a great insight to how she has found the family days over the years especially what makes the Scottish family day special. To register please sign up here www.eventbrite.co.uk/e/scottish-soft-fa...
Embracing the Extraordinary Journey: Positive about Down syndrome
Переглядів 29Рік тому
The podcast today is part of our series, chatting to partner organisations to find out more about what they do. This podcast welcomes Nicola Enoch, joining us from Positive about Down Syndrome and she is their Founder & CEO. As a down's syndrome parent herself she set this charity up for families looking for further support and resources. Found out more: downsyndromeuk.co.uk/ Reach out at conta...
Pregnancy after a Trisomy 18 diagnosis
Переглядів 634Рік тому
We spoke to Mandy Nelson, mother to Amari, who has Trisomy 18 and who recently became a mother to Dante. In this episode, Mandy shares her heartfelt journey from her pregnancy with Amari, to the present day, where Amari is now a thriving 3.5-year-old, albeit with special educational needs. She also took us through what it's like having a baby after a high risk pregnancy and shared honestly abou...
Leaving the hospital with my Rainbow baby
Переглядів 126Рік тому
We spoke to Becky Smith, Mum to Freddie who had trisomy 18 and more recently, she became Mum to Jaxon, her Rainbow baby. Becky opens up about her overwhelming fears and anxiety throughout the pregnancy, revealing how she cautiously began preparing for the arrival of her little one only around the 30-week mark. Step into her world and immerse yourself in a real-life story of pregnancy after loss...
A Sibling's Path: From Loss to Strength as a Rainbow Baby
Переглядів 136Рік тому
Join us for an insightful episode of the SOFT UK podcast as we speak with Jess Scott, whose life has been profoundly influenced as a rainbow baby after the loss of her sister, Sarah, to Patau syndrome. Listen to her remarkable journey, and how it has shaped her relationships, career, and parenting. Be sure to catch her three important messages at the end, delivering a story of honesty and optim...
Navigating the Complexities of Genetic Counseling: Insights from a Trainee Genetic Counselor
Переглядів 131Рік тому
Navigating the Complexities of Genetic Counseling: Insights from a Trainee Genetic Counselor
Siblings Talk: Having a Sibling With Trisomy 18
Переглядів 136Рік тому
Siblings Talk: Having a Sibling With Trisomy 18
Jenny Hudson - Chiropractor, IBCLC, Infant Massage Teacher
Переглядів 44Рік тому
Jenny Hudson - Chiropractor, IBCLC, Infant Massage Teacher
SOFT UK Family Day: A Year in Reflection
Переглядів 99Рік тому
SOFT UK Family Day: A Year in Reflection
Making a Difference: The Power of Volunteering with SOFT UK
Переглядів 24Рік тому
Making a Difference: The Power of Volunteering with SOFT UK
10K Steps a Day: Getting Half Marathon Fit
Переглядів 128Рік тому
10K Steps a Day: Getting Half Marathon Fit
Trisomy 13 Story: Improve, Inspire, Empower (Bereaved)
Переглядів 4,9 тис.Рік тому
Trisomy 13 Story: Improve, Inspire, Empower (Bereaved)
SOFT UK: Anticipatory Grief - A Parents Experience During and Beyond Pregnancy
Переглядів 61Рік тому
SOFT UK: Anticipatory Grief - A Parents Experience During and Beyond Pregnancy
Breaking the Silence: Deaf Awareness Week and Trisomy 18
Переглядів 48Рік тому
Breaking the Silence: Deaf Awareness Week and Trisomy 18
In Our Own Little Bubble: Coping with TFMR - Marie's Story
Переглядів 58Рік тому
In Our Own Little Bubble: Coping with TFMR - Marie's Story
In Conversation With Sarah: A Mosaic Pregnancy and Journey
Переглядів 44Рік тому
In Conversation With Sarah: A Mosaic Pregnancy and Journey
SOFT UK: Royal Parks Half Marathon Discussion
Переглядів 34Рік тому
SOFT UK: Royal Parks Half Marathon Discussion
Can HIV Cause Trisomy 18 Edwards Syndrome
Переглядів 63Рік тому
Can HIV Cause Trisomy 18 Edwards Syndrome
Introduction to a Professional Advisor: Jenny Hudson
Переглядів 152 роки тому
Introduction to a Professional Advisor: Jenny Hudson