WonderFIL smiles

a Facial Infiltrating Lipomatosis community

Home          About FIL         About PROS        Donate          About Us

Facial Infiltrating Lipomatosis Community WonderFIL smiles News section
October 2020
The clinical study we have been waiting for, the study of the use of the PIK3CA inhibitor Alpelisib from Novartis in PROS patients. Info has just been released and the estimated study start is February the 2nd 2021. For all the details please visit clinicaltrials.gov

October 2020
WonderFIL smiles very first Newsletter is out and arrived in our subscribers inboxes this week. A FILamily patient story, interview with an expert, new shirts and more.. Read it here.

October 2020
Novartis has launched an informational website about PROS for patients.

October 2020
Now Recruiting for PROS patients with Venous/Lymphatic Malformations!
First in Human Trial of Topical VT30 in Pts With Venous/Lymphatic Malformations Assoc With PIK3CA or TEK Gene Mutations.

October 2020
New Open Access article about FIL.
«Facial infiltrating lipomatosis (FIL) is a rare and underreported clinical entity. ... Clinical management varies from conservative liposuction at an early age to aggressive subtotal resection in adulthood.»

October 2020
A new article out:
"Custom Pediatric Oncology NGS Panel Identifies Somatic Mosaicism in Archival Tissue and Enhances Targeted Clinical Care".
"Conclusions: Our study highlights the clinical utility of using a robust, oncology-focused NGS (Next Generation Sequencing) assay to identify PIK3CA mosaicism in non-cancer cases. It is feasible to use archival samples that are more than a decade old to obtain a molecular diagnosis which can then be used to improve healthcare management."

September 2020
A new article about the use of gingival (gum) biopsy to detect genetic mosaicism in overgrowth syndromes. Read the whole article here.

August 2020
We have created an own page for information about PROS on our website. Go check it out.

July 2020
Novartis receives approval from The European Commission (EC) for the PIK3CA inhibitor Piqray® (alpelisib) for breast cancer indication. Read the media release here.

July 2020
New article out on PROS. "PIK3CA vascular overgrowth syndromes: an update"

June 2020
An exciting new article is out! 🔬
«As there is currently no curative treatment for PIK3CA-related overgrowth spectrum, our results identify HSF1 as a new potential therapeutic target.»

May 2020
The FDA approved PIK3CA inhibitor Alpelisib has been recommended to receive marketing authorisation for breast cancer indication from the EMA (European Medicines Agency). Expected authorisation within the summer.
May 2020

A printable brochure about FIL for children has been created and can be downloaded here. Please contact us if you would like the brochure in a different language.

May 2020
The pharmaceutical company Novartis has created an informational website about PROS geared towards physicians.

March 2020
Download our free WonderFIL smiles Printable Activity Pages here.

March 2020
Novartis will start a retrospective chart review study of patients with PIK3CA-Related Overgrowth Spectrum who have received treatement with the PIK3CA inhibitor Alpelisib

February 2020
Rare Disease Day took place on February 29th and WonderFIL smiles community raised our hands in solidarity. Check out the videoclip we made on our Facebook page.

February 2020
Our friends at CLOVES Syndrome Community (an organization for another PROS condition) receives important grant from the Chan Zuckerberg Initiative's Rare As One Project.

January 2020
Novartis' presentation at JP Morgan informed about the PIK3CA inhibitor Alpelisib (Piqray/BYL719) is in phase 2 for PROS indication! A clinical trial is rumored to start soon.

November 2019
Novartis was granted orphan drug designation by the FDA for its drug Alpelisib in the treatment of PIK3CA Related Overgrowth Spectrum (PROS) condition.

October 2019
ArQule announces first patient dosed in registrational MOSAIC trial of Miransertib for the Treatment of Proteus Syndrome and PIK3CA Related Overgrowth Spectrum.

August 2019
WonderFIL smiles member, Zachariah (6), was featured in a People article about "A doll like me".

June 2018
A study published in Nature about a cohort of 19 PROS patients who all(!) displayed improvement by drug treatment with the alpha specific PI3K inhibitor, Alpelisib.
Facial Infiltrating Lipomatosis community WonderFIL smiles FILamily

Main characteristics of

Facial Infiltrating Lipomatosis - FIL

  • Facial asymmetry with one cheek prominently bigger than the other. 
  • Enlargement of the facial skeleton espicially the cheek bone and jaw on the affected side.
  • Early eruption of oversized teeth on affected side.

Get a full overview of Facial Infiltrating Lipomatosis (FIL) here.

Facial Infiltrating Lipomatosis, FIL,

also referred to as Congenital Infiltrating Lipomatosis of the Face, a rare, noninherited overgrowth condition affecting one side of the face.

A diagnosis on the PIK3CA Related Overgrowth Spectrum.

WonderFIL smiles vision
FIL Community
FIL Newly Diagnosed
FIL Blogs
FIL Brochure

We have an active private Facebook group. A group solely for individuals with Facial Infiltrating Lipomatosis and their parents/partners. 

We want you to know that you are not alone. Read our letter to those who have recently been diagnosed with Facial Infiltrating Lipomatosis.

Read blogs by individuals affected by Facial Infiltrating Lipomatosis. 

We´ve made a brochure for kids about Facial Infiltrating Lipomatosis. You can find it here.

FIL Donate
FIL T-shirts

Advances made in precision medicine offer new hope to those affected by FIL and PROS conditions. We wish to make a difference and support this important research! 100% of proceeds will go towards research.

As a nonprofit we are also eligable to receive donations through Facebook fundraisers.

Make a secure donation by using the PayPal button below

Raise awareness and also support our t-shirt fundraiser for more research into Facial Infiltrating Lipomatosis. Visit our store at Bonfire.com

Kindness is always in Fashion
One of a Kind
I am Limited Edition WonderFIL smiles
I Love Someone WonderFIL
WonderFIL smiles t-shirt

About WonderFIL smiles

A global community for those affected by Facial Infiltrating Lipomatosis

Our FIL community started in 2017 as a group on Facebook. We lovingly named our group WonderFIL smiles inspired by the popular book Wonder and the unique smiles of those affected by FIL.

As of January 2020 WonderFIL smiles is a registered non-profit organization, headquartered in Norway and run on a voluntary basis.

We aim to support people with FIL & their families, and to empower them with information, knowledge and connectivity.

Linda Roeksund

Linda Roeksund with her daughter

Founder & Chairwoman

"My hope is for WonderFIL smiles to be what I wished had existed when my baby got her FIL diagnosis. Where those affected can get the information they seek and need and most importantly, to connect with other FIL patients and families, people who can genuinely say; I understand."

- Linda Roeksund

This website is intended to connect families and people with Facial Infiltrating Lipomatosis (FIL), share experiences, provide information and support.

It is not intended for medical diagnostic use or to replace medical consultation. No images on this website may be used or reproduced.  

Copyright © 2020 WonderFIL smiles. All rights reserved. WonderFIL smiles is a registered non-profit organization.

Do you like cookies? By using our site you agree to our use of cookies to deliver a better site experience.

Got it