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.
Receiving a diagnosis of PROS
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.
Financial Assistance
Our team at GoPI3Ks understand that living with a rare overgrowth condition can & does lead to extra financial costs.
Our aim is to offer financial grants to those who have been diagnosed with PROS, this has included, but not limited to:
- Funding mobility equipment, such as electric wheelchairs.
- Funding specialised footwear & clothing.
- Help with medical costs.
- Funding family weekend expenses (accommodation & travel*)
For more information & an application form please email us at: gopi3ks@yahoo.com
Helpful resources:
We understand that being diagnosed with & living with a rare medical condition can bring it’s own set of issues. Whether this be the extra financial burden, the psychological & mental health affect plus the feeling of being the only one out there & where to go if you need specialised footwear or clothing.
Please click on the Resource button for more information:
GoPI3Ks has social media pages on both Twitter & Facebook where you can connect with others either living with PROS or have family/friends with the condition.
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