Future Of Down's

thesun.co.uk/fabulous/76128… please retweet this honest and authentic article including case studies of genuine modern families.

ted.com/talks/chimaman… this is the issue we face: People promoting tests and terminations peddle just one story. We show many stories and a human face of the modern lived experience of DS. Ask if you want to know more - we have 6,000 families living well with DS to talk to.

@sallyephillips Social media is saving Down’s in many ways by empowering everyday people to show the authentic progress that’s been made by people with DS despite the generations of discrimination and negativity. 💕

Watch out for #Illumina and other #NIPT manufacturers trying to ‘groom’ #TeamT21 #DownSyndrome to promote their product. We’ve had an effect and they’re trying to silence it. #equallyvalued #justaboutcoping #wouldntchangeathing

@BBCr4today @ARCantenatal It’s a shame you didn’t ask for another perspective on this. We’ve worked tirelessly and without funding to empower people with DS and their families so that less families feel pressured to destroy what are often planned for much-wanted babies. Testing is fraught with pressure.

The introduction of a more accurate screening for Down's Syndrome in the NHS in England is being held up, and Jane Fisher from @ARCantenatal says the delay is very unfortunate #r4today

@newunity we run several support groups helping families who have a child with Down’s Syndrome feel valued in a society where so many babies with the condition are aborted (often due to societal pressure). We work independently for a more loving, inclusive and accepting society.

@LisaFar34706367 @BBCr4today @ARCantenatal @PositiveaboutDS @dontscreenusout We hear from prospective/parents wanting a more balanced perspective and they ask for contact with others with lived experience. Luckily we are unfunded, parent-powered, with no need to support any commercial interests. Future of Downs challenges the prevailing narrative.

@BBCr4today @ARCantenatal If this NIPT is given to every pregnant woman many more babies will be identified as having Down’s syndrome pre-natally. Will Jane Fisher commit to referring those parents to sites like @PositiveaboutDS and @dontscreenusout who are better informed about DS?

@sallyephillips @FeralMother44 @redincandescent @BBCr4today @ARCantenatal @PublicHealthEng @DSRF_UK @DSAInfo Exactly. Answers to why are we testing for Down syndrome? Should state sponsored screening for conditions for which there is no cure/treatment be permitted? What level of learning disability makes it acceptable to test and terminate? Is this in line with Equality Act?

@sallyephillips @redincandescent @BBCr4today @ARCantenatal @PublicHealthEng @DSRF_UK @DSAInfo Exactly when they most certainly haven’t!!

@FeralMother44 @redincandescent @BBCr4today @ARCantenatal @PublicHealthEng @DSRF_UK @DSAInfo She implied the ethical issues had been resolved.

@redincandescent @BBCr4today @ARCantenatal @PublicHealthEng @DSRF_UK @DSAInfo Agreed. The ‘training’ midwives have received often suboptimal. Do we have to sit by and wait until our community reduced by three quarters (as has happened in some places) before anyone will listen to us? How can we seek protections for schooling & welfare in this climate?

@BBCr4today @ARCantenatal Maybe the delay is no bad thing considering the new @PublicHealthEng info released yesterday for NIPT still contains glaring inaccuracy about DS despite @DSRF_UK @DSAInfo and parents telling them this in the review process

@DSRF_UK @dontscreenusout @sallyephillips Excellent presentation and lots learned. With thanks x

#WDSC2018 our chair Dr Corcoran will be speaking at 11:30 on the forth suite on Supporting Tomorrow's Parents with tips and advice from our journey @Future_Of_Down @dontscreenusout @sallyephillips

#WDSC2018 what a team 🏴󠁧󠁢󠁳󠁣󠁴󠁿😊

#WDSC2018 and we are here!! It’s still quiet in the hall (after an amazing party last night). Heartening to see so many people with Down’s working at the conference. Glasgow is a welcoming place😊🏴󠁧󠁢󠁳󠁣󠁴󠁿 #workhardplayhard #Downssyndrome #Downsyndrome #downsyndromescotland

@sarahhoss and the marvellous Mr G at the #wdsc2018 dinner. Have fun everyone! 🏴󠁧󠁢󠁳󠁣󠁴󠁿😊

Future of Downs is attending the World Down Syndrome Congress in Glasgow this week and v excited to meet so many parents, (members of our FoD private groups receiving lived-experience advice) at the Scottish Night! #wdsc2018 #wearelegion #downssyndrome tweeter: @sarahhoss

@sarahhoss Parent-power and the wisdom of the crowd. @DSAInfo interesting blog from 4 years ago on Facebook groups saving #DownSyndrome

Thoughts? #Downsyndrome @Future_Of_Down #parentpower facebook.com/13212553358021…

@DSAInfo @sallyephillips @lizbobchilton @LisaFar34706367 @upsofdowns21 @ARCantenatal @MidwifingAbbie @WeMidwives @PositiveaboutDS Future of Downs often receives anxious messages from parents looking for non-directed info and support. We tap into the ‘wisdom of the crowd’ and refer to specialist secret groups on Facebook that we have built up into authentic communities happy to help x

@sallyephillips @lizbobchilton @LisaFar34706367 @upsofdowns21 @ARCantenatal @MidwifingAbbie @WeMidwives @PositiveaboutDS @Future_Of_Down Hi Sally, we recommend women and couples call us directly - we will listen, offer support and expert information on any topic.

Let's begin! #NIPT is a screening test due to be rolled out in England in October. There have been questions over the way Down Syndrome has been portrayed in the literature. So our 1st question is: 1. Is it possible to be neutral when discussing Down Syndrome? #wemidwives

@CrimminsKM @DSAInfo @Future_Of_Down would be happy to distribute info to our 6,000 strong parent group if the DSA would like to share it with our Admin team.