Fundraising Events
If you would like to see your event on this page and in our newsletter, please send permissions and photographs to database@soft.org.uk.
Click on the blue headings to view the event.
Cycling Event
Jason Tomkins will be doing several events on his road bike travelling between 60-100 miles on 31st October 2013, in memory of his nephew Oliver. http://uk.virginmoneygiving.com/JasonTomkins
Torbay Half Marathon
Steve Pilkington is running the Torbay Half Marathon on 23rd June 2013 to raise money for Soft UK. Follow the link to visit his fundraising page. http://uk.virginmoneygiving.com/Steve Pilkington
Memory Bracelets and Charms
Not knowing she had Edwards until after her birth, Julie and Murphy Babatunde's baby girl Damilola sadly passed away peacefully at home, 3 months old. Since then Damilola has inspired them to raise funds for Soft UK through creating beautiful bracelets and charms.
All items can be customized in whatever colour or charms, items available are mobile phone charms, handbag charms and bracelets.Julie's group on facebook, where more of these charms & bracelets can be seen is:
lola's little gift's or https://www.facebook.com/groups/563672586996294/?bookmark_t=group
Cycling Event 12th May
On Sunday May 12th Glen Cockman will be facing one of his toughest challenges. Getting up on a Sunday morning to get to Southwark Park for 9 O'Clock.
If he can overcome that then he faces the bigger challenge of cycling 55 miles across London and traversing every bridge between Tower Hill to Hampton Court. As well as this his route will take in several famous landmarks and parks.
Glen is looking to raise money for SOFT a charity that is very close to his heart. Please follow the link to Glen's 'Just Giving' page http://uk.virginmoneygiving.com/GlenCockman1
Northumberland Event
Neil Hindle is taking part in an event on 15th September 2013 in Northumberland in memory of his son Oliver. Please follow the link to his page http://uk.virginmoneygiving.com/NeilHindle
Three Peaks 24 Hour Challenge
Adam Ingall and Chris Hammond will be doing the three peaks challenge and hoping to complete it within 24 hours on 22nd and 23rd June to raise money for Soft Uk.
London Marathon
Tim Donoyou is taking part in the London Marathon on 21st April 2013 to raise money for soft. http://uk.virginmoneygiving.com/TimsBlindStagger
Paris Marathon
Jonathan Clark will be putting himself through a huge amount of pain and agony to run the Paris marathon on the 7th of April. Running a marathon is a personal goal he's always hoped to achieve and I intends to run/walk/hobble/crawl accross that finish line no matter what on the day.
"I thought it be a great idea to raise some money for a charity to help give me that little extra boost of motivation on the day. All types of support would be appreciated whether it be money donations, words of encouragement or post marathon physiotherapy". http://uk.virginmoneygiving.com/Jonathan.Clark5
Sponsored Head and Beard Shave
On Tuesday 12th March Robert Turnbull will have had his head and beard shaved. All money raised will be divided between two charities:
SOFT UK and Montfield Support Services Hansel Fund: helping fund activities and outings for clients using the service.
Any donation would be much appreciated by Robertand the two charities.http://uk.virginmoneygiving.com/RobertTurnbull
Sponsored Silence
Amy Fall is doing a sponsored silence on 4th March 2013 to raise money for Soft UK. http://uk.virginmoneygiving.com/AmyFall
Nominate them before 3rd May for the 'Who cares award' for the chance to win them a break.
InsuranceWith, supported by Genetic Alliance UK, have launched the Who Cares Award to give carers the opportunity to be recognised for all of their hard work. The awards will be based on nominations from the public or through dedicated charities of those people who support others, dedicate their lives or put their lives on hold to care for others. Candidates can be young or old, a professional nurse or a relative. You can nominate someone you know here.
SOFT UK Northern Ireland Family Day 2013
The Northern Ireland Family Day will take place on Saturday 10th August at the Charelmount Arms Hotel in Armagh.
Join other SOFT UK families to chat, share experiences and bring the children along for the fun activities! There will also be some remembrance time for those families who wish to remember a loved one.
As always everyone is very welcome!
Refreshments will be provided.
For more information and booking, please contact enquiries@soft.org.uk
Siblings Research Project
Joanne Fullerton, a Trainee Clinical Psychologist with Bangor University is completing a study investigating the experiences of siblings of children with life limiting conditions. She is looking for volunteers to take part. The aim of the study is to better understand the experiences of this group of siblings. If you are the parent of a sibling aged between 3 and 16 years, and you and your sibling child wish to take part, simply email her on j.fullerton@bangor.ac.uk or contact her via telephone on 07957 620608
SOFT US Website Launch
Our colleagues at SOFT USA have just launched their new website. It has a fantastic new look at contains lots of resources for families and also professionals. There is a comprehensive research section, providing all the details of the latest research on Trisomies and related issues. There are some beautiful family stories and videos and links to all their support materials. The site also has a foreign language translation function for those who first language is not english.
SOFT US have worked in partnership with us for many years and have kindly given us permission to feature their content on our own site, making sure that all families have access to the information that they need.
So head on over and have a look at www.trisomy.org
CEN report on Emotional Impact of Tube Feeding in Scotland
The CEN have published their results on their work improving support for families in Scotland of children who are tube fed. The full report is available here. http://www.cen.scot.nhs.uk/files/Emotional_Impact_Evaluation_Jan13.pdf
