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SOFT UK 2012 Family Weekend - Programme Announced

Trisomy13/18

• Why Us
• Patau’s and Edwards’ syndromes
• How rare are Patau’s or Edwards’ syndromes?
• Related Disorders
  • Mosaicism
  • Partial trisomy and deletions
  • Ring chromosomes
  • Holoprosencephaly (HPE)
• Prenatal Diagnosis
  • Screening tests
  • Diagnostic tests
• Termination
  • Before a pregnancy is terminated you need to know
  • The Heartbreak Of Termination newsletter issue 40
  • Saying Goodbye by Shelley
  • Matthew by Jo and Richard
  • In Memory of Maple Hills
• Advice for Pregnancy
  • During the pregnancy
  • When a baby is stillborn or dies shortly after birth
  • Simon James Friday July 10th 2009: 00.10 – 1.10am by Stacey
  • Charlotte 26.11.06- 29.05.07 by Laura
  • Jack David 9.02.10 - 12.03.10 by John and Louise
  • Sample Birth Plan
• Caring for a baby with T13/18
  • When a baby lives
  • Feeding difficulties
  • More about caring
  • Video - One extra chromosome
  • Liam, extracts from Mel's blog
  • Noah by Debbie, Mo Ali, Joshua, Thomas and Megan
  • Eve Charlotte
  • Children's Hospices
  • Caring for Amy
• Research
  • In Memoriam
  • Fetal Loss
  • Recurrence Risk
  • Maternal Age Prevalence
  • Antenatal Diagnosis
  • Invited Comment Dr John Carey
  • Natural History of Trisomy 18 and Trisomy 13
  • Natural History of Trisomy 18 and Trisomy 13: Psychomotor Development
  • TRIS Project
  • TRIS Survey
  • 2008/09 Medical Data
  • What Should We Do Now?
  • Trisomy 18 Data from Switzerland
  • Prevalence of Children with Life Limiting Conditions in the UK

Support

• SOFT Publications
  • Your Unborn Baby
  • Your Baby
  • Sibling Support Booklet
  • Sibling Support Booklet
  • SOFT UK Newsletters
  • SOFT UK Newsletter - Daniela
• Family Events
  • Online booking form - SOFT UK Family Day 29 June 2013
  • SOFT UK Northern Ireland Family Day 2013
  • SOFT UK Family Day 2013
  • SOFT UK Scottish Family Day Saturday November 17th 2012
  • SOFT UK Family Weekend May 5-6th 2012
  • SOFT UK Scottish Family Day November 12th 2011
  • SOFT UK Northern Ireland Family Day 13th August 2011
  • SOFT UK Family Day May 7-8th 2011
• Email and Telephone Support
  • Support in England and Wales
  • Support in Scotland
  • Support in Northern Ireland
• Contact SOFT UK
• Trustees and Advisers
  • History of the Website
  • SOFT UK Trustees
  • SOFT UK Advisers
  • SOFT Founders
• SOFT Worldwide
• SOFT Website
• Useful links

News

• Nominate them before 3rd May for the 'Who cares award' for the chance to win them a break.
• SOFT UK Northern Ireland Family Day 2013
• Siblings Research Project
• SOFT US Website Launch
• CEN report on Emotional Impact of Tube Feeding in Scotland
• Edwards' Syndrome Debate in the Scottish Parliament
• Beautiful Memorial Typographic Prints
• Insight All Store Tour
• SOFT UK Newsletters
  • SOFT UK Newsletter - Daniela
  • Spring Summer 2013
  • Autumn Winter 2012
  • Spring Summer 2012
  • Autumn winter 2011
  • Spring Summer 2011
  • Autumn Winter 2010
  • Spring 2010
  • Autumn 2009
• SOFT UK News
  • Board of Trustees Meeting September 2012
  • Board Meeting Feb 2013

SOFT Children

• Baby
• Baby Griessel
• Eva Rose
  • Gallery
• Freya
• angel
• Toby Robert
• Angel Rose
• Ayla Hope
• Brooke India
• Kate-Lynne

Bereavement

• Coping with loss
• Memories
• A funeral
• A poem for fathers
• Sibling grief
• Precious past, hopeful future
• Tribute Poems
  • In memory of Summer Rose
  • In memory of Hope
  • In memory of Chantal
  • In memory of Antony
  • In memory of Liam
  • In Memory of Maple Hills
  • From Precious Past Hopeful Future by Erica Brown
  • For Fathers

Remembrance

Membership

• Benefits of membership
• Personal pages
• Family Events
• Families caring for a child
• Code of Conduct
  • SOFT UK Code of Conduct and Policies
  • How to protect the privacy of yourself and other members
• Join SOFT
• Volunteering with SOFT UK
  • Volunteering with SOFT UK
  • Current SOFT UK Volunteer Vacancies
  • Volunteer Training October 2011
• Facebook Survey
• Facebook Survey Thanks

Fundraising

• Fundraising Events
  • Cycling Event
  • Torbay Half Marathon
  • Memory Bracelets and Charms
  • Cycling Event 12th May
  • Northumberland Event
  • Three Peaks 24 Hour Challenge
  • London Marathon
  • Paris Marathon
  • Sponsored Head and Beard Shave
  • Sponsored Silence
  • Bath Half Marathon
  • McKenna Coffee Morning
  • Beautiful Memorial Typographic Prints
  • Lucy Makina
  • Skydive for Simon
  • Insight All Store Tour
  • Fundraising in Memory of Robin
  • Fundraising in Memory of Toby Robert Smith
  • Fundraising in Memory of Oliver
  • Original Factory Shop
  • Jim and Ewen's Big Trek
• Why SOFT needs fundraisers
• Fundraising is FUN
• Easy Online Fundraising
• Legal Guidelines for Fundraising
  • Charity Collections in England and Wales
  • Charity Collections in Scotland
  • Charity Collections in Northern Ireland
• Gift Matching by Employers
• All About GIFT AID
  • Gift Aid Declaration Form
• Fundraising Packs
• Where to send donations
• Archived Events
  • London Virgin Marathon 2012
  • Fundraising in memory of baby Imogen 3.5.11 - 8.5.11
  • The rainbow coloured beard
  • Sky Dive in Memory of Leon 2.3.11-12.9.11
  • White water rafting on the River Tummel
  • Bike ride and other events
  • Mount Kilimanjaro Climb
  • Liverpool 10K
  • Northern Ireland Fundraiser
  • BUPA Great North Run
  • Chippenham Half Marathon
  • Chippenham Half Marathon
  • Great Scottish Run
  • 887 mile trek round the coastline of Shetland
  • Bath half marathon
  • £2,395 Raised In Celebration of Lucy due November 1st
  • London Marathon
  • ASICS British Half Marathon
  • BUPA Great Manchester Run
  • London Bridges Walk
  • At Swaffham Area, A Sure Start Children’s Centre
  • Malakoff 6-a-Side Charity Dodgeball Tournament
  • Nutcracker Ballet
  • Catriona
  • For Lily
  • CPD Bespoke Training Course for SOFT Volunteers and Befrienders

Professionals

• SOFT UK Advisers
• UK professional support - Jennifer
• SOFT UK Advisers
• Letter to Professionals
• Contact SOFT UK
• Family and professional support - Jennifer