MEET OUR PEOPLE
We’d like to introduce you to our exceptional team and board members, the people who make it all happen. People passionate about making a difference for a condition many believe too rare to consider.
THE TIN SOLDIERS TEAM
Co-Founder
Amanda Cali
We may start out isolated and afraid but by educating ourselves and joining hands with others, we end up together and strong.
Co-Founder & Executive Director
Odette Schwegler
Doing this work with such incredible humans, is a humble reminder of who we are as humans. The most powerful place we can be as humans is when we come together with the common purpose of care.
"Do your little bit of good where you are; it's those little bits of good put together that overwhelm the world.” - Desmond Tutu
Communications Strategist
Vanda Harries
"What lies behind you and what lies before you, are tiny matters compared to what lies within you."
– Ralph Waldo Emerson
Technology Wizard
Massimo Bastiotto
"Do not go where the path may lead, go instead where there is no path and leave a trail"
– Ralph Waldo Emerson
Graphic Design Guru
Ronel Finn
"The greatest glory in living lies not in never falling, but in rising every time we fall."
– Nelson Mandela
Accounts, Finance & Production Manager
Helen Potter
"At times, our own light goes out and is rekindled by a spark from another being. Each of us has cause to think with deep gratitude of those who have Lighted the Flame within Us"
- Albert Schweitzer
Technical & Operational Advisory Services
Damian Potter
It is only when you really search, that you find what you are looking for.
ADVISORY COMMITTEE
Dr. Abdelali Majdi
Stéphanie Hoffman
Amanda Cali
Dr. Fred Kaplan
Dr. Clive Friedman
Sharon Neumann
Eric Grinstead
Diane Weiss
BOARD MEMBERS
Dr. Patricia Delai
Dr. Delai entered medical school when she was 18 and chose to be a dermatologist. In 2000, feeling the need to learn more and face new medical challenges, she went back to medical school to work on Dermatology and Internal medicine. This was when she met her first FOP patient, and it changed her life forever. To help this patient Dr Delai went to Philadelphia to know more about FOP. Back in her country, she started her search for new patients that may be living in complete isolation and for multigenerational families that could give clues to finding the FOP gene. In 2003, together with American doctors she found in Brazil a multigenerational family that was crucial for the gene discovery in 2006.
In 22 years, Dr Delai has found 100 FOP patients on her own and helped many others with musculoskeletal diseases that were not FOP, by giving them medical assistance and advice. In 2004 Dr. Delai founded the Brazilian FOP Association and conducted Family meetings through the years in Brazil. With the help of Tin Soldiers, in 2022 Brazil became the first country to create a medical rule that will help to find FOP patients in the future - big toes will be checked at birth and FOP will be suspected and confirmed or not by clinical evolution or genetic test.
Prof. Chris Scott
Dr. Scott is a Professor and head of Paediatric Rheumatology at Red Cross War Memorial Children’s Hospital and the University of Cape Town.
He is currently interim director of the Clinical Research Center at UCT. His research and educational focus is on the care of patients with rare and rheumatic diseases in Africa and other less-resourced communities.
Prof Scott has a special interest in access to care, Paediatric Vasculitis, SLE, Juvenile Idiopathic Arthritis, and Fibrodysplasia Ossificans Progressiva.
He is the PReS Chairperson of the Global Task Force for Musculoskeletal Health Task Force and chair of the International Clinical Council for FOP. He also serves on the Steering committee of the Paediatric Society of the African League of Associations for Rheumatology.
Matodsi Tshidzumba
Matodsi studied at University of Johannesburg (formerly Vista University – Soweto campus) and graduated with a Bachelor of Commerce degree.
He travelled to other African, European and North American countries through the student organisation AIESEC and performed his internship with KPMG Canada during 1998. Upon his return, he served articles with KPMG (SA) before joining Edgars Consolidated group as internal auditor.
Matodsi is an enterprise risk management, ethics, business continuity and internal auditing specialist with over twenty-year experience.
With extensive knowledge in risk management processes, supply chain management, finance, budgeting, governance, compliance, and business continuity plans, he has worked for the Department of Science and Technology, Gauteng Treasury and Johannesburg Roads Agency.
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