A Message of Gratitude for All that Amanda Cali Has Given

On November 13, Amanda Cali, mom to Ian who lives with FOP, announced that she will be retiring from her life's work with FOP. She will remain on the Tin Soldiers Advisory Board and the Cali family will continue their philanthropic support of Tin Soldiers. We, the IFOPA's Board and Staff, want to take this opportunity to express our gratitude to Amanda for nearly 30 years of service to the FOP community.

I began my journey with the FOP community in February 2016. As I went through the interview process and did my own research on FOP, Amanda Cali's name kept coming up. She and I connected even before my first day as I knew I had much to learn from her years of service. My first week on the job was an in-person Board meeting where I also had the opportunity to meet our Founder and President Emeritus Jeannie Peeper. Again, I kept hearing about the many programs Amanda Cali envisioned and brought to life for the FOP community. I also learned what an incredible friend and mentor she was to many people living with FOP and to many, many moms.

Amanda graciously offered to host a luncheon in her home for me in early March where she invited other families from New York and New Jersey. I left feeling blessed to be in a position where I could help carry forward the work this amazing mom and advocate had started. I say "help" on purpose, because I knew I could not do it alone. Amanda and I have had a lot of special moments together over the last eight years. Here are a few highlights.

She's continued to provide opportunities to connect with families like the night I met Oliver & Julie Collins from Australia over dinner in New York City. She taught me the critical importance of the patient voice at scientific and pharmaceutical company meetings like the FOP Drug Development Forum. I've watched her son Ian Cali teach medical students about FOP on their first day at the University of Pennsylvania School of Medicine. I've learned how Ask-a-Doctor and Ask-a-Dentist meetings at FOP Family Gatherings are critical not just for the families, but for the doctors and dentists as well. I've watched programs she's started in recent years like the International Clinical Council on FOP and Tin Soldiers blossom, playing critical roles in the global FOP Community. We shared a dance (and tears and hugs) with FOP families in Africa.

And I've witnessed the impact their family's extremely generous donations have had on FOP research and supporting families. From establishing the Center for Research in FOP and Related Disorders at the University of Pennsylvania (UPenn) to endowing chairs and professors. From funding research grants, supporting the FOP gene discovery, and providing critical funds to start the FOP Registry and grow the Ability Toolbox: Everyday Tools for Independent Living program.

Below is the nomination I worked with many others to submit for Amanda in 2020 for the Global Genes Champions of Hope Award in Advocacy. It provides an incredible picture of the breadth and depth of her work, funding, and love for the FOP community.

One of my favorite quotes is credited to American author Mark Twain.

"It's not what you know, it's what you do with what you know."

Amanda is a true representation of this. She has spent 29 years doing for her son, for the nearly 1,000 known diagnosed people with FOP and their families around the world, and for those who are yet to be diagnosed. Thank you doesn't feel adequate, but I'll say it anyway. Thank you, Amanda, for an astonishing volunteer career! We are so grateful for the many paths you have laid for others to walk – people with FOP, parents, family members, researchers, doctors and health care workers, pharmaceutical companies, and IFOPA staff.

With immense gratitude,

Michelle Davis
Executive Director, IFOPA
On behalf of the IFOPA Board of Directors and Staff

Amanda Cali's Nomination for the 2020 Global Genes Champions of Hope Award in Advocacy

Editorial Note: Since this application was submitted in 2020, the prevalence of FOP was found to be closer to 1 in a million. In 2024, a new documentary from Tin Soldiers about FOP, The Whisper, debuted on the film festival circuit. 

Describe why your nominee is a Champion of Hope in the selected field.

Thirty years ago, Amanda Cali’s son Ian was born with bent big toes. Five years later, after being misdiagnosed multiple times, Ian was correctly diagnosed with fibrodysplasia ossificans progressiva (FOP). While it was a defining moment for the Cali family, it was also a defining moment for the FOP community. The breadth and depth of Amanda’s service to the FOP community is unparalleled. For 25 years Amanda’s work has touched every part of the FOP community and the IFOPA – from research to patient and family support to awareness and advocacy to organizational development. To support their work, the Cali’s established The Radiant Hope Foundation which, over the years, has funded FOP research and provided grants to the IFOPA, other FOP organizations and funded projects initiated and led by Amanda herself. In addition to working with the IFOPA, Amanda has led many initiatives, including much needed and much beloved Mothers' Retreats. Amanda’s most recent initiative “Tin Soldiers” started with a documentary on FOP to be used to help find undiagnosed patients. Tin Soldiers has expanded to include patient and family support in South Africa and nearby countries and has now become a global continuing medical education (CME) program with the aim of teaching health care professionals about FOP so they are better equipped to find and care for the undiagnosed.

Describe how and why their work is innovative for the patient population they serve.

The IFOPA’s mission is to fund research to find a cure for FOP while supporting, connecting and advocating for individuals with FOP and their families, and raising awareness worldwide. As you look at a list of Amanda’s work over the last 25 years you’ll see a mother carrying out this mission and constantly solving the needs of patients and families today, fighting for better care, and providing funding for research and fostering research collaboration that provides hope for treatments and, one day, a cure.

Research Funding

There may be other grant funding that the Cali’s and The Radiant Hope Foundation have provided to the University of Pennsylvania, but the primary programs include:

1. Ian L Cali FOP Research Fund at the University of Pennsylvania established in 1995
   
   
2. Cali Developmental Grants Program established around 2005
   
   
3. Cali & Weldon FOP Research Professorship at the department of orthopedic surgery at the University of Pennsylvania School of Medicine (established by the Cali’s & Weldon’s in 2012) and awarded to Dr. Eileen Shore, Co-Director of the Center for Research in FOP & Related Disorders at UPenn

In addition to the Cali’s personal funding of the research work at UPenn, Amanda has spent many years fundraising to bring in additional donors to make more FOP research possible.

Amanda also led The Radiant Hope Foundation to fund FOP research at the University of California, San Francisco.

Research Meetings

Envisioned and organized research symposiums to increase knowledge of FOP and encourage discussion and collaboration in FOP research. She has been organizing and attending symposiums since the 2nd International FOP Symposium in 1995. In 2014, Amanda led a team of IFOPA volunteers that conceptualized and organized the first FOP Drug Development Forum (DDF) bringing together both academic and pharmaceutical researchers, as well as FOP expert clinicians. Amanda designed this program with opening and closing talks from patients and parents and patient panels so that the voice of the patient could be heard. The DDF continues today as one of the IFOPA’s signature research programs – held every other year, alternating between the US and Europe.

Research Communications

Before the Internet and the IFOPA’s website, Amanda amassed a library of articles on FOP research that were printed and mailed or faxed to families. In 2002 it was formally established as the Betty Anne Laue IFOPA Resource Center.

FOP Registry

Through The Radiant Hope Foundation, Amanda secured visionary funding for the establishment of the FOP Registry in 2015. It is the only registry for FOP in the world and now includes both a patient and medical portal and is available in nine languages.

Patient Organizing and Advocacy

In the late 1990’s/early 2000’s Amanda led the work to find FOP patients around the world and to connect with clinicians caring for FOP patients so more patient connections could be made. She was instrumental in the work to find multi-generational families even traveling to countries around the world so that multi-generational families could provide the genetic material needed to discover the defective gene that causes FOP.

In 2005 Amanda was instrumental in organizing a “Friendraiser” event on Capitol Hill to spread awareness of FOP.

For many years Amanda has worked with researchers to promote and educate families about opportunities to participate in surveys, patient advisory boards, and other observational studies and clinical trials.

Patient and Family Support

For 25 years, Amanda has been the go-to person in the community when a family is diagnosed or needs guidance and support as the disease progresses. She has taken countless phone calls, replied to thousands of emails and is omni-present on social media responding to questions and encouraging patients and families.

Amanda was involved in the creation of the first Patient Emergency Cards in 1998 and led the creation of the first FOP Medical Binder – a tool designed to help patients better manage their care. Since the Binder debuted in 2010, she has overseen subsequent updates, including a critical update in 2020.

One of her most revered contributions is the Mothers’ Retreats she hosted with another FOP mom Hillary Weldon starting in 2004. These events were often hosted in her homes on the beach or in the mountains of Colorado which provided a real respite for moms caring for a child with a chronic, debilitating disease that will likely result in an early death due to the heart and lung complications of the disease. Most of these events were organized for a handful of moms to attend each event. In 2018, Amanda led a volunteer team that organized a Mothers’ Retreat for dozens of mothers from around the world. Two years later, the moms that attended still talk about the impact that event had on their lives.

Disability Services

FOP causes bone to grow uncontrollably in the soft tissue of the body – muscles, tendons and ligaments. Patients become significantly disabled as this second skeleton develops. Amanda saw a need to empower individuals with FOP and create a problem-solving mindset by promoting independence through the creation and use of tools and home adaptations.

In 2003, Amanda led the establishment of the Traveling Resource Center which was expanded in 2007 to become the FOP Patient Manual for Tools & Gadgets. In 2018 Amanda began working very closely with IFOPA staff to expand this work into a program known as Ability Toolbox: Tools for Independent Living Program. Amanda secured a three-year grant from The Radiant Hope Foundation to build the program and hire a Family Services Coordinator to lead the expansion of this critical, empowering work.

International Leadership

As mentioned earlier, Amanda pioneered the early work in the FOP community to truly make the IFOPA an international organization and find and connect with patients and families and treaters around the world. In 2007, Amanda led the establishment of the IFOPA’s International Presidents' Council (IPC). The IPC is a network of volunteers who are committed to helping their national and regional FOP communities by keeping FOP families connected, supported, and informed about treatments and research. Today, there are 20 countries represented in the IPC.

Family meetings have been held in the United States since 1991. Once their family joined the FOP community in 1995, Amanda became an integral part of the organizing committees for these gatherings. Amanda wanted to ensure that families around the world had the same opportunity and assisted with planning and provided funding to meetings in both Argentina and Brasil. Amanda has also provided critical counsel to many other national organization leaders and the IFOPA staff organizing their own meetings.

Patient Care

For years Amanda has spoken with FOP expert physicians about the need for a consortium of FOP experts. In 2017, Amanda made this idea a reality working with Dr. Fred Kaplan to create a governance structure and mission for the International Clinical Council (ICC) on FOP. The ICC is an autonomous and independent group of internationally-recognized physicians and dentists who are clinical experts in FOP from 12 nations and six continents. The ICC was established to coordinate and consolidate a global voice for the best practices for clinical care and clinical research for people who suffer from FOP. The Radiant Hope Foundation has provided funding for the ICC’s activities, including annual meetings. Amanda serves the group as its Executive Associate.

FOP Awareness

Amanda’s heart is for patients and families. There are currently about 900 known FOP patients in the word, but with a prevalence of 1 in 2 million and a world population of 7.8 billion there should be ~4,900 people known to be living with FOP. Amanda had a vision for a documentary and outreach program that would be used to find those in the FOP family across the globe that are alone and do not know what they are suffering from. Amanda became Executive Producer for the documentary known as “Tin Soldiers” which was filmed in 2018 and 2019 on 3 continents and has received many Film Festival awards. Tin Soldiers was the featured rare disease documentary screened during the 2020 Rare Disease Legislative Advocates Rare Disease Week on Capitol Hill.

The search for the undiagnosed began in South Africa and the Tin Soldiers program has expanded to include patient and family support in South Africa and nearby countries. When COVID hit and it became impossible to show the documentary and offer awareness programs locally, Tin Soldiers created a global continuing medical education (CME) program with the aim of teaching health care workers about FOP so they are better equipped to find and care for the undiagnosed.

Tin Soldiers was Amanda’s vision and while The Radiant Hope Foundation has been a key funder, Amanda has raised several hundred thousand dollars to create the documentary and build and execute the related outreach programs.

IFOPA Organizational Development

The IFOPA was founded by Jeannie Peeper, a woman living with FOP, in 1988. Jeannie managed the organization as an unpaid volunteer, but quickly the work of the organization became more than one person could manage. In 1998, Amanda funded two staff positions to assist Jeannie in running the organization. When Jeanne retired from daily activities in 2005, Amanda became Board President and served in that role until the end of 2006. She served on the IFOPA’s Board of Directors until 2010.

In 2015, the IFOPA undertook an in-depth strategic planning process and Amanda served in a key role on that committee as the organization hired an executive director and changed its staffing and office model to better position itself for the significant advances that were being made in FOP research and drug development.

How has your nominee inspired others?

First and foremost, Amanda Cali’s work on behalf of the FOP community has inspired and brought hope to FOP patients and families. As you can see, the work she has funded, developed, and led has touched every aspect of the patient experience – research, patient and family support, patient care, awareness, and advocacy.

Her work, especially the recent Tin Soldiers documentary and outreach, has inspired academic researchers, physicians, and industry representatives. The message and outreach of Tin Soldiers remind them that their work will impact many more people if we can just find the undiagnosed.

As Executive Director of the IFOPA, I and my team have the unique advantage of benefitting from the groundwork laid by Amanda. The work she started 25 years ago makes our work possible today. She has taught us and inspires us, by her example, to truly care for the FOP community.


What challenges has your nominee overcome in the pursuit of their work in the rare disease community? 

When Ian was diagnosed in the mid-1990’s, the FOP gene hadn’t been identified, there were fewer than 50 known FOP families in the United States, the World Wide Web had only been available for about 4 years, email was just starting, it still cost money to place a long distance phone call, and social media didn’t exist. Despite all of those challenges and more, Amanda found patients worldwide, fueled research, built programs that encouraged better patient care and support, and helped move a group of people with the same disease into a family that continues to grow and support one another to this day.

In 2020, when the Tin Soldiers outreach program was prevented from showing the documentary and offering awareness programs locally, a global CME program was created to teach health care workers about FOP so they are better equipped to find and care for the undiagnosed. No matter the challenge, then or now, Amand's passion helped her find a way to move the mission forward.