Foundation for Prader Willi Research UK

The mission of FPWR UK is to eliminate the challenges of Prader-Willi through the advancement of research #PWS #praderwilli

[Foundation for Prader Willi Research UK @FPWRUK]

Thank you so much 🧡

[Terri Holmes @TerriHolmes01]

Happy #GoOrange Day 🟠! @SmithLabUEA are proud to be funded in part by @FPWRUK, the foundation for Prader-Willi Research! Today, we showed Piwi the Giraffe some of our awesome lab skills and explained the importance of funding research 👩‍🔬🦒🔬#pws #research

[Foundation for Prader Willi Research UK @FPWRUK]

A number of weight loss drugs are being investigated for PWS. Read more at https://t.co/FaPZ7egFd3

#fpwruk #pws #praderwillisyndrome #research

[Foundation for Prader Willi Research UK @FPWRUK]

Don’t miss out sign up today

[PWS Stronger Together @pws_together]

🔹 Join Our Next Virtual Clinical Trials Webinar! 🔹

Join us at 7:30 PM on February 25th for our third virtual clinical trials webinar—an informative session designed to keep you up to date on the latest developments.

https://t.co/lMqhNbyUVh

[Foundation for Prader Willi Research UK @FPWRUK]

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 https://t.co/VdW8AyWyso

[Foundation for Prader Willi Research UK @FPWRUK]

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 https://t.co/twqxCraGQf

[Foundation for Prader Willi Research UK @FPWRUK]

It’s #GiveBack weekend at MyGivingCircle. They are donating 50p per vote for the first 5000 votes this weekend.
Please head to https://t.co/hOLOJVOphT to cast you vote. But please hurry the offer only applies to the first 5000 votes of the weekend.
#fpwruk #pws #mygivingcircle

[Foundation for Prader Willi Research UK @FPWRUK]

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

[Foundation for Prader Willi Research UK @FPWRUK]

Sign up for the next @pws_together webinar at https://t.co/twqxCraGQf

[PWS Stronger Together @pws_together]

Register for the next webinar at 7.30 pm on 25/02/25.
We have DCCR updates from Soleno and what you can do to help, Consyance will discuss their phase 2 trial CSTI500 and Dr Evelien Gevers will explain what happens at a trial screening visit.
Sign up at:
https://t.co/lMqhNbyUVh

[Foundation for Prader Willi Research UK @FPWRUK]

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 https://t.co/GM7kz0Q0QS

#fpwruk #pws #NationalPuzzleDay

[Foundation for Prader Willi Research UK @FPWRUK]

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 https://t.co/nOH7qTK1Mu

#fpwruk #pws

[Foundation for Prader Willi Research UK @FPWRUK]

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.
https://t.co/6MEriUyD9c

#fpwruk #pws

[Foundation for Prader Willi Research UK @FPWRUK]

AI seems to be emerging everywhere. How can it help PWS Research?

https://t.co/jVmuznqFQx

#fpwruk #pws #praderwillisyndrome

[Foundation for Prader Willi Research UK @FPWRUK]

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 https://t.co/TxwjL63CQT and please tell your friends and family to sign up too 🛒

[Foundation for Prader Willi Research UK @FPWRUK]

Check out all of our coming events at https://t.co/TpIEkv6vhW

[PWS Stronger Together @pws_together]

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

#15q

[PWS Stronger Together @pws_together]

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

[PWS Stronger Together @pws_together]

Vision issues are common across 15q conditions.

#praderwillisyndrome #angelmansyndrome
#dup15q

[PWS Stronger Together @pws_together]

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

#15q

[PWS Stronger Together @pws_together]

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

[Foundation for Prader Willi Research UK @FPWRUK]

Day 1

[PWS Stronger Together @pws_together]

15q conditions are caused by genetic changes to the q11-13 region of chromosome 15, but happen in different ways.

#15q #15qawareness #praderwillisyndrome #angelmansyndrome #dup15q