KT Foundation

Raising awareness of Klippel-Trenaunay Syndrome, a debilitating & serious vascular disorder. Funding research for better treatments and a cure!

[GoPI3Ks (Genetic Overgrowth PI3K Support) @GoPI3Ks]

Article & interview with @CanaudLab looking at the use of Alpelisib for those with CLOVES Syndrome / PIK3CA mutations https://t.co/5UElasCERI

[Pau Castel @castel_pau]

There is a story that I have been wanting to tell for a while regarding a scientific journey that started more than 6 years ago. It’s been a really eye-opening process and I hope it can serve as an inspiration to others, especially those starting their research careers.

A 🧵...

[K-T Support Group @KTSupportGroup]

Registration is open for 2022 K-T Support Group Conference - https://t.co/JLBQYDU2Fa

[Anna Kerr @DrAnnaKerr]

Proud to share the work @Sisk_MD & I did on parents’ advice for parents & clinicians caring for children with #vascularanomalies. This is part of a study funded by @CLOVESSyndrome & @KTSupportGroup. Grateful for their support & for all the parents who participated. #kchc2022

[Vivek Subbiah, MD @VivekSubbiah]

🧬Gain-of-function mutations in the PIK3CA gene cause lymphatic malformations. PIK3CA inhibitor administration reduced lymphatic malformations in a mouse model & in patients. #precisionmedicine 🎯💊applications beyond cancer @OncoAlert https://t.co/hgA081cavx

[Science Magazine @ScienceMagazine]

Using a new genetic mouse model and MRI imaging in 6 patients, researchers in a new @ScienceTM study have discovered that the approved cancer drug #alpelisib can combat rare genetic disorders known as lymphatic malformations. https://t.co/WHP7l10XrL

[Susanne Fleig @fleig_s]

PIK3CA inhibitor alpelisib can reduce lymphatic malformations! Great translational work by @CanaudLab #vascularbiology #lymphatics

[Guillaume Canaud (MD, PhD) @CanaudLab]

Super proud of our latest paper just released in @ScienceTM. We created a mouse model that recapitulates PIK3CA associated lymphatic malformations, demonstrated alpelisib efficacy and treated 6 patients with severe LM. Treatment led to major improvement!
https://t.co/NV4s1GKM43

[CLOVES Syndrome Community @CLOVESSyndrome]

Join Dr. Bryan Sisk & Dr. Anna Kerr for an info session Sat 6/26th at 1pm EST to learn about the VACOM research study. The goal of this project is to learn about communication & care experiences from caregivers & patients affected by vascular anomalies.

https://t.co/prza45lAMO

[CLOVES Syndrome Community @CLOVESSyndrome]

Early bird registration and abstract submissions close in one week - on June 15th. ⏰

#PIK3CAISM21 #PIK3CARelatedOvergrowthSpectrum

https://t.co/M0qZSjjDs4

[Clare Logan @clogenomics]

Absolutely blown away by the work from @CanaudLab. Repurposing of cancer drugs to alleviate symptoms of PIK3CA overgrowth syndromes. Really smart work and it reminds me that although challenging, rare genetic disease is such an exciting and rewarding field #GRD21

[Nicky Whiffin @nickywhiffin]

Incredibly inspiring story of genetics led drug discovery/repositioning in PIK3CA-related overgrowth syndrome (PROS) from @CanaudLab. Selective PIK3CA inhibitors were already in devel (for BC) - dramatic improvements in patients and PROS mouse model #GRD21
https://t.co/1jAPsYPIjp

[Novartis Cancer @NovartisCancer]

In observance of #RareDiseaseDay, Novartis is sharing stories from those impacted by PIK3CA-Related Overgrowth Spectrum (PROS), a group of rare conditions caused by a PIK3CA mutation. Follow along to learn more about how PROS affects patients and caregivers.

[Lymphatic Malformation Alliance @LM_Alliance]

Updated COVID & vaccine FAQs for vascular anomalies patients from LGDA & advocacy groups @KTSupportGroup, @CLOVESSyndrome, National Organization of Vascular Anomalies (NOVA), @vbf_usa @projectfava & their medical directors: https://t.co/JT8h1z6L4u

[Guillaume Canaud (MD, PhD) @CanaudLab]

Deeply honored and proud to announce that our lab was awarded with #ERCCoG. Our 3rd ERC grant since 2015. #PROSPECTS is dedicated to fundamental #PIK3CA biology. Next five years will be very exciting and full of hope for patients with PIK3CA disorders. Thank you @ERC_Research

[K-T Support Group @KTSupportGroup]

The registry for vascular anomalies patients with COVID-19 is live at https://t.co/7UiTuIOPua. We need international participants of all ages. #secureva

[National Organization for Rare Disorders (NORD) @RareDiseases]

Looking for some activities to do while at home? Don't forget about NORD's coloring pages, word search and crosswords. We'd love to see your #RareArt - post a picture of your finished pieces and tag NORD on social!

Downloadables: https://t.co/R8mKIoHRy3

[National Organization for Rare Disorders (NORD) @RareDiseases]

Looking for some activities to do while at home? Don't forget about NORD's coloring pages, word search and crosswords. We'd love to see your #RareArt - post a picture of your finished pieces and tag NORD on social!

Downloadables: https://t.co/R8mKIoHRy3

[National Organization for Rare Disorders (NORD) @RareDiseases]

TOMORROW, SEPT 25 AT 3PM ET! Part 2 in our webinar series with @ASGCTherapy, The Science Behind Gene Therapy, will explore the ways in which evidence-based science guides manufacturers and other related topics. Register now: https://t.co/1Xu2ypyrab