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
Technical & Operational Advisory Services
Damian Potter
It is only when you really search, that you find what you are looking for.
Administrative Assistant
Sarah Walters
"The best and most beautiful things in the world cannot be seen or even touched - they must be felt with the heart."
– Helen Keller
Graphic Design Guru
Ronel Finn
"The greatest glory in living lies not in never falling, but in rising every time we fall."
– Nelson Mandela
ADVISORY COMMITTEE
Dr. Abdelali Majdi
Sharon Neumann
Stéphanie Hoffman
Diane Weiss
Dr. Fred Kaplan
Mona Al Mukaddam
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 Pediatric Rheumatologist at University of Ottawa. HIs research and educational focus is on the care of patients with rare and rheumatic diseases in less-resourced communities. Prof Scott has a special interest in access to care, SLE, Juvenile Idiopathic Arthritis, and Fibrodysplasia Ossificans Progressiva and other rare bone diseases.
Dr Scott is the Co-Chair of Global Task Force for Paediatric Musculoskeletal Health, Director of Paediatric Musculoskeletal Matters and is the Medical Director of Tin Soldiers Global.
He also serves on the Steering committee of the Paediatric Society of the African League of Associations for Rheumatology and the International Clinical Council for FOP. He is on the editorial board of Best Practice and Research Clinical Rheumatology as and the Pediatric Rheumatology Online Journal.
Dr. Clive Friedman
Clive graduated from the University Of Witwaterand in 1976. He received his Paediatric training in New Orleans 1979-1981. He has been on faculty either full time or part time at Western since then. He has been involved with Dentistry for Persons with Special Needs since 1981.
He has been President of iADH, ADH and is a founding member of CSDH and continues to serve as a consultant and member of various committees in all these organizations.
Clive recently received fellowship in the iADH. He has been a member of the ICC (International Clinical Council for FOP ) since 2016 and recently updated the oral health section of the guidelines. He currently is the secretary treasurer of the ICC and sits on the Board of Tin Soldiers.
Clive still practices part time clinical dentistry continues to lecture, teach and mentor in many different arenas.
Amanda Laue Cali
Amanda Cali’s unwavering passion for helping those in need, especially as a mother to a son with Fibrodysplasia Ossificans Progressiva (FOP), has made her a prominent advocate and leader in the rare disease community for nearly 30 years. She has driven advancements in medical research, clinical care, and patient advocacy through her roles as a Trustee of the Radiant Hope Foundation. Amanda has facilitated global funding programs that support medical research and organizational development for rare diseases, significantly impacting the lives of those with FOP. Her efforts have fostered collaboration among researchers, patients, and pharmaceutical companies to accelerate treatments. Amanda has also played a pivotal role in establishing the International Fibrodysplasia Ossificans Progressiva Association and leading initiatives such as the International Clinical Council on FOP and the International Presidents Council. As a dedicated patient advocate, Amanda has spearheaded international and domestic projects aimed at enhancing the lives of individuals with FOP. These initiatives include scientific events to advance treatment pathways and specialized care, alongside educational resources that improve quality of life.
In 2019, Amanda co-founded Tin Soldiers Global with Odette Schwegler, an organization dedicated to finding the estimated 7,000 individuals with FOP who lack a diagnosis, connecting them with essential medical care. Her contributions have significantly advanced medical research, clinical care, education, and advocacy for individuals with FOP worldwide, earning recognition in Rare Revolution Magazine. Amanda’s outstanding dedication to the FOP community led to her receiving the International Fibrodysplasia Ossificans Progressiva Association’s prestigious President’s Lifetime Leadership Award. Her visionary leadership continues to set standards for collaborative efforts in rare disease communities, positively impacting countless lives affected by FOP.
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.
Eric Grinstead
Eric Grinstead has 3 decades in the biopharmaceutical industry in which he worked for vanguard innovators such as Glaxo, Amgen, Genzyme, Alexion, and Clementia with their treatments for HIV, Renal, Oncology, Gaucher, Pompe, Fabry, Hematology, and FOP communities.
In addition, Eric established and served as President of Amgen’s SafetyNet® Foundation and Alexion’s Complement Foundation. Now in retirement, Eric considers working with the FOP community as the highlight of his career and is
happy to do whatever he can to further the mission of Tin Soldiers.
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