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Hello!!

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Sheila Khawaja
Posts: 3
Topic starter
(@sheila)
Member
Joined: 1 year ago

Hello to all PICC members! My name is Sheila and have been involved in advocacy for over 10 years - I was diagnosed with a rare endocrine disease over 20 years ago and was lucky enough to find a positive spin to something that sidetracked my entire life! 

I look forward to interacting with the community in the new year, getting to know each other, supporting one another and bringing the best out of ourselves, our organizations and our plans!

On a lighter note, here are some fun facts about me: 

 🙂 my best dish: lasagne

 🌺 favourite vacation type: mountains, relaxing at a spa with a good book

 🤩 cat or dog person: both, but prefer dogs

 👍 strength: find the positive in every bad situation

😇 weakness:  can't ever refuse good ice-cream, no matter the seasion!

 

What are your fun facts? Wishing you all Happy and Joyful holidays!


3 Replies
Posts: 8
Admin
(@lisbethsnede)
Member
Joined: 2 years ago

This is Sheila! 


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Posts: 1
(@debrobins)
Member
Joined: 1 year ago

Hello 2025.   I'm a rare disease carer and voluntary patient advocate for Duchenne muscular dystrophy care and research, over 30yrs PAG involvement since my son dx at age 6. My health representations currently (I'm retired teacher-librarian) are eclectic:  HTAi working group, national DMD advocacy (part-time for peak body SOSDF), State Genomics CAG, District Hospital & Health Services CAG, national Flexible CT Toolkit consumer advisor. 

I have had an interest in improving systems of blood collection since 2020 after correlating my son's growing difficulty with other neuromuscular patients and even children with NMDs.  The growth of RWE, health informatics and the growth of precision medicine will utilize  biomarkers more and more, meaning patients with complex needs, especially children, deserve more efficient testing than time consuming and uncomfortable collection procedures. 

Vacation: Staying home alone

Pet: Enzo is a dog / live-in grandchild

Strength: Networking

Weakness: Ukulele


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1 Reply
Sheila Khawaja
(@sheila)
Joined: 1 year ago

Member
Posts: 3

@debrobins Welcome to the Forum Deborah! 

I'm Sheila, the community manager here at PICC - It's a pleasure to meet you virtually.

What you have done and continue to do is very inspiring and courageous. Yes, it takes courage and determination to fight for our loved ones. 

Would you like to share some more thoughts by answering a few interview questions on a form? We are in the process of creating a collection of interviews which will then become a source of inspiration for many more. 

If so, please drop me a line at shk@piccunited.org - we can always have a call to get to know each other more and respective projects!

Sheila

 


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