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FAQ Page

Trisomy

What is trisomy?

You can find a detailed explanation on our website https://www.soft.org.uk/what-is-trisomy

What do my test results means?

This can be a very confusing and overwhelming time, we hope to help you make sense of it all. Take a look here to read more information on chromosome tests explained https://www.soft.org.uk/chromosome-tests

Where can I get information?

SOFT UK produces a range of publications for families affected by trisomy 13 (Patau's syndrome), trisomy 18 (Edwards' syndrome) and related conditions. https://www.soft.org.uk/publications

How do I explain this to my children?

This can be a confusing time for you as parents but also the wider family, particularly siblings. This booklet will offer you support to help explain your situation to younger children https://www.soft.org.uk/system/cmsassets/347.pdf

Fundraising

How can I donate to SOFT UK?

The best way to make a donation to SOFT UK is by using our Virgin Money Giving page. They do charge a small fee; however they also claim Gift Aid on our behalf, which is amazing as it frees up some of our time.

If you would prefer to pay funds directly into our bank account, please email enquiries@soft.org.uk and we’ll send you our bank details.

How do I fundraise for SOFT UK?

The opportunities available for fundraising are endless. Some of the ways you could raise funds for us include:

  • Taking part in an organised event such as 5Ks, 10Ks, Marathons, Treks, Cycling challenges etc
  • Arranging your own event – think bake sales, bingo, quiz nights, golf days etc
  • Personal Challenge – give something up, sponsored slim, head shave, give up social media for a week/month/year
  • Extreme Challenge – Skydive, Bungee Jump, Abseil

Whether you know what you want to do, or you would like some help to decide, get in touch with us by emailing enquiries@soft.org.uk.

Are there materials and support to help my fundraising?

SOFT UK is a very small charity with limited resources. We sadly don’t have enough people fundraising for us to justify buying items in large quantities (which reduces the unit prices). With our staff and volunteers working remotely, we also don’t have a central location where we can hold stock.

If you would like to have your own t-shirts or materials printed, we’d be more than happy to send you a high-resolution version of our Logo.  Email enquiries@soft.org.uk and we’ll send it across.

Another option is to order SOFT UK branded clothing and accessories from Total Clothing. Please note that in order to keep costs as low as possible, we haven’t added any mark-up, therefore we don’t receive any funds from the sale of these items.  

My school would like to raise funds for SOFT UK, how do I do this?

There are plenty of ways for your school to get involved, such as:

  • Non-Uniform Days
  • Christmas Jumper Days
  • Sponsored silence
  • Talent Show

We would be delighted to chat through your ideas. Please get in touch by emailing enquiries@soft.org.uk.

Where does the money I raise go?

SOFT UK rely almost entirely on the generosity of our wonderful supporters. Quite simply, we wouldn’t be able to carry out our work without their donations and amazing fundraising efforts.

The money you raise could help us to provide training for our support volunteers, it could help to pay for families to attend one of our Family Days, or it could help us to pay for the production and printing of our information leaflets.

To find out more about what we do, visit this page.

Volunteering

What volunteering opportunities are there at SOFT UK?

  • Support Volunteer – If you have ‘lived experience’ of Trisomy 13 or 18 and could support others on their own Trisomy journey, through emails and phone calls, this crucial role could be for you.
  • Family Events Volunteer - This is a great opportunity for volunteers who have great teamworking skills, are good at time management and have skills in any related area (such as administration, event planning, marketing and bereavement support).
  • Fundraising Assistant – For SOFT UK to keep providing essential support to families, we rely on fundraising. Fundraising Assistants are a key point of contact for supporters, they advise on events and offer support to people fundraising.
  • Proof Reader – The proof-reading team are a vital part of making sure that the SOFT UK newsletter is ready for publication. Anyone with excellent written English and an ability to work basic computer programmes can help, so please get involved!
  • Social Media Assistant – Social media is a vital point of contact between SOFT UK and our supporters. In our regularly updated Facebook, Twitter and Instagram pages, we share information about fundraising, trisomy and the families we help. If you have a working knowledge of social media platforms, we can use your skills!
  • Web Content Assistant – Our web content assistant volunteers help staff develop and update the website by managing content and uploading material, either helping with general administration across the site, or within a particular project.
  • Writer – SOFT UK generates a huge amount of written content for our newsletter, website, blogs and articles. Whether it’s a regular contribution or one-off project, if you have experience writing and an awareness of any area relevant to trisomy you could help us to generate content and edit articles.

How do I volunteer for SOFT UK?

Please get in touch with us at administrator@soft.org.uk

How are volunteers supported at SOFT UK?

Our volunteers receive an induction, they receive relevant training and lots of support. We are committed to providing a safe, happy and mutually beneficial volunteering experience.

Support

Is SOFT UK for me? 

SOFT UK is for every individual affected by Trisomy. It may be that you have just received a diagnosis and are unsure of the next steps, or you may be the partner, family member or friend of someone directly affected by Trisomy and you too would like support and advice. SOFT UK is for everyone, no matter if you decide to end your pregnancy or not. We are here to give impartial information to help those navigate their own Trisomy journey.

Where can I register for SOFT UK?

You can register through this link https://soft.us6.list-manage.com/subscribe?u=57712ad4b6e9d5fb09d506e13&id=5819c2474d

How does your support line work?

Our support line is run by our SOFT UK Support Volunteers who are people with personal experience of Trisomy 13, Trisomy 18 or related conditions. They have all completed our bespoke SOFT UK training programme to enable them to provide peer support to other parents and are mentored on an ongoing basis. 

How can I get in touch with your support line?

To get in touch and speak to a support volunteer please email enquiries@soft.org.uk They will be happy to arrange an initial email enquiry or arrange a telephone call if you would prefer.

How can I help SOFT UK?

We simply couldn't do the work we do without the huge efforts of our many supporters. With your help we can do more - support more families, reach more health professionals, make more of a difference to the lives of families across the UK. You can donate, volunteer and fundraise in a number of ways https://www.soft.org.uk/Get-Involved

Feedback

How do I give feedback to SOFT UK?

Your opinion matters to us and we would love to hear how we are doing and if there is any further support we can offer to help your journey. Please don’t hesitate to contact us on administrator@soft.org.uk and send your feedback.


Registered Charity: 1002918 (England and Wales) SC043341 (Scotland). Copyright © 2005 – 2017 SOFT UK. All rights reserved.