Welcome to GoPI3Ks
We are a registered charity (1176289) based in the UK for patients and the families & friends of patients with a Segmental overgrowth in the PIK gene, known as PROS: (PIK3CA Related Overgrowth Spectrum).
PROS is an umbrella term used for a number of conditions, please click on our learn more button for more information on Segmental Overgrowth Syndromes.
We know that when you first receive a diagnosis it can leave you with a mixture of emotions & thoughts. Some of these can be positive (for me I was that excited to finally receive my diagnosis that I got my own PIK3CA tattoo) However, it can also leave you with many more questions than answers.
From personal experience I know parents can often blame themselves. One thing to remember is that PROS is caused by a random gene mutation & nothing either parent did.
We understand that many PROS patients will also see other doctors who have very little knowledge of PROS.
This website created by Novartis gives a great breakdown of what PROS is. It also has a great downloadable fact sheet in the resources section to help others understand a little more about PROS.
Our aim is to offer financial grants to those living with PROS, for more information please email us at: gopi3ks@yahoo.com
We also provide information, offer support to PROS patients and their family and friends. To connect with other PROS families please see how social media pages:
2020 FUNDRAISING
For my birthday this year I’m raising money for the charity I run: www.gopi3ks.com Like last year every person who donates will go in to a raffle where 2 LUCKY WINNERS can choose 1 of these 3 FABULOUS PRIZES. £20 ODEON CINEMA VOUCHER, £20 RESTAURANT CHOICE VOUCHER (UK only for the vouchers) or a 12 MONTH SUBSCRIPTION TO DIVA MAGAZINE. Thanks to my friend Laura Sexton for donating the subscription. Thanks to all my wonderful friends who last year raised an amazing £700! What can we raise this year?
This year we raised over £1,000! THANK YOU TO EVERYONE WHO DONATED
Please see the link below for our first newsletter from 2014:
newsletter December 2014 Issue 1_vp_2
Below is the newsletter from January 2016:
Below is the newsletter from December 2016:
Below is the latest newsletter from December 2017
Below is the latest newsletter from December 2018
GoPI3Ks newsletter December 2018