Foundation for Prader Willi Research UK

Thank you so much 🧡

A number of weight loss drugs are being investigated for PWS. Read more at fpwr.org.uk/weight-loss-dr… #fpwruk #pws #praderwillisyndrome #research

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Bella has taken her mission for PWS awareness Royally high with a recent letter to King Charles. Bella, who loves the Royal Family, wrote to the Palace late last year and was thrilled to receive a reply. Read more about Bella’s Royal reply at fpwr.org.uk/raising-royal-…

It’s just over 2 weeks until the next PWS Stronger Together webinar - have you signed up yet? The third virtual clinical trials webinar takes place on 25th February at 7:30 and you can register at pwsstrongertogether.co.uk/Webinars

It’s #GiveBack weekend at MyGivingCircle. They are donating 50p per vote for the first 5000 votes this weekend. Please head to link.fpwr.org.uk/mygivingcircle to cast you vote. But please hurry the offer only applies to the first 5000 votes of the weekend. #fpwruk #pws #mygivingcircle

This week is Feeding Tube Awareness Week. Many babies with PWS require feeding support when they are born due to a weak and uncoordinated suck making breast and bottle feeding too difficult. #fpwruk #pws #praderwillisyndrome #feedingtube #feedingtubeawarenessweek

Sign up for the next @pws_together webinar at pwsstrongertogether.co.uk/Webinars

Today is National Puzzles Day! Whilst technically a day in the USA rather than the UK, we felt a good opportunity to look into why some people with PWS excel at jigsaw puzzles. Check it out at fpwr.org.uk/the-puzzle-sol… #fpwruk #pws #NationalPuzzleDay

Out and about this winter? Don’t forget your PeeWee. Take a picture of your peewee and post it with the hashtag #theadventuresofpeewee. Don’t have a PeeWee of your own? No worries, he’s available to to purchase in our online shop at fpwr.org.uk/product/pee-we… #fpwruk #pws

Growth Hormone is now a well known treatment for children with PWS. But what are the benefits for adults? A study is looking into whether Growth Hormone can slow down premature ageing in adults in PWS which would be groundbreaking. fpwr.org.uk/can-growth-hor… #fpwruk #pws

AI seems to be emerging everywhere. How can it help PWS Research? fpwr.org.uk/can-ai-help-us… #fpwruk #pws #praderwillisyndrome

Do you support us on @giveasyoulive ? It's completely free, and if you sign up before 28th Feb we'll receive a bonus free donation! Sign up today at link.fpwr.org.uk/giveasyoulive25 and please tell your friends and family to sign up too 🛒

Check out all of our coming events at fpwr.org.uk/events/

Speech can be affected by changes in the 15q region. #15q

The majority of 15q cases happen spontaneously & your chances of having another child with that condition are as low as the rest of the population. However, some cases can be passed through families. It is advisable to speak about your individual case with a Geneticist. #15q

Vision issues are common across 15q conditions. #praderwillisyndrome #angelmansyndrome #dup15q

Issues with behaviour are common across 15q conditions but with some variations between the different conditions. #15q

15q conditions also are classed as Rare Diseases, which according to the UK Government means a Disease that affects less than 1 in 2000 people. #15q #15qawareness #praderwillisyndrome #angelmansyndrome #dup15q

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