Thank you for a truly wonderful 2018!

The IFOPA made huge strides in our mission-critical work: funding more research; supporting, connecting and advocating for individuals with FOP and their families; and raising awareness worldwide. 

None of this would be possible without you:

  • Sharing the impact of FOP on your lives
  • Following us on social media and sharing our posts and Tweets
  • Donating to support our work in research, education and support, and advocacy and awareness
  • Holding fundraisers on Facebook or in your communities
  • Supporting one another through conversations online, by phone, and in person

As we begin 2019, we are making big plans to expand our programs and services like never before. We hope you stay connected and supportive because the FOP community needs you now more than ever!

January 2018 

IFOPA Welcomes New Board Members 

The IFOPA’s Board is made up of those living with FOP, family members, and others that care about the FOP community. They serve without compensation and meet at least six times a year providing governance and fiduciary oversight for the IFOPA. Meet the IFOPA’s Board of Directors.

February 2018 

IFOPA Launches Webinars for the FOP Community

With two worldwide clinical trials and one in Japan, Adam Sherman, the IFOPA’s Director of Research Development & Partnerships, presents the webinar Clinical Studies and Trials: Your Choice, Your Role, Your Responsibility

FOP Community Generously Embraces Rare Disease Day 2018

In support of the 2018 Rare Disease Day #ShowYourRare campaign, FOP community members changed their Facebook profile pictures to celebrate that they are 1 in 2 million or to honor their loved one or a friend with FOP.  167 donors give $8,066 funding more than 4.5 days of research at the University of Pennsylvania.

March 2018 

Patient Directory Launches Connecting the FOP Community 

The IFOPA launches the online Patient Directory containing profiles of individuals with FOP, complete with photos and contact information, so community members can connect with one another. An individual living with FOP can join at any time by completing a Patient Directory Profile.

New Video to Support Community Fundraising 

A new video is now available for use by anyone fundraising to benefit the IFOPA and our work to #cureFOP. It can be used at fundraising events, in email campaigns, or posted on social media.

April 2018 

FOP Registry Celebrates Two Years of Research

The FOP Registry, an international database collecting demographic and health data from individuals living with FOP, releases its second annual report. The Report provides community members, clinicians and researchers valuable insights on the FOP patient experience. 

IFOPA Offers Webinar on ABLE Accounts

The IFOPA partners with the National Disability Institute to offer a webinar to educate community members on ABLE (Achieving a Better Life Experience) Accounts, a tax-advantaged savings account for individuals with disabilities and their families. 

FOP Awareness Day Campaign Generates More Than 81,000 Views

During April there are more than 81,000 views of IFOPA Facebook and Twitter posts to raise FOP awareness. The FOP community also gives generously – holding fundraisers and making donations that total $28,018. These generous gifts are matched – raising more than $56,000 to fund research, educate and support families, advocate and raise awareness.

Family Services Manager Joins the IFOPA Staff Team

Hope Newport joins the IFOPA as Family Services Manager. In this role, Hope collaborates with families affected by FOP to create programs, services and educational opportunities for the FOP community. Hope can be reached at [email protected] or +1 816-854-0920. 

May 2018 

IFOPA Participates in Million Dollar Bike Ride to Award Two New Research Grants

Eleven Team #cureFOP riders participate in the Million Dollar Bike Ride on May 20. Every dollar raised is matched to help fund two new FOP research grants. Thanks to riders riding in honor of AJ Gonzales, Ashley Martucci, and Evelyn Mann, as well as a team from Clementia Pharmaceuticals.

Battle of the Biotech Bands Benefits the IFOPA

The Band Semi Good Lookin’ wins big at Boston’s Battle of the Biotech Bands with $46,000 in proceeds benefiting the IFOPA. Semi Good Lookin’ band members are with Blueprint Medicines, Aquinnah Pharmaceuticals, and Harmonic Lab Solutions. 

IFOPA Launches Career Talk and In Remembrance Pages

As part of the IFOPA’s mission to connect and support the community two new pages are launched on

  1. Career Talk where you can learn how others living with FOP have navigated their career path, what led them to their current profession, the obstacles they have faced, adaptations they've found helpful and more. 
  2. An In Remembrance page to honor and remember our friends and loved ones who have passed on.

June 2018 

IFOPA Celebrates 30th Anniversary

The IFOPA marks 30 years of advancing FOP research and supporting individuals living with FOP and their families. 
Learn more about FOP History
• Explore the early days of the IFOPA
Read two special articles written by Founder and President Emeritus Jeannie Peeper
Hear from six of our founders as they reflect on the IFOPA's 30th Anniversary

July 2018 

Announcing the 2018 Jeannie Peeper Awardees


Five awardees receive the Jeannie Peeper Awards named in honor of the IFOPA's Founder. The Jeannie Peeper Awards recognize those who make exceptional contributions to the worldwide FOP community through their leadership, service, fundraising, awareness-building and other accomplishments.

Of special significance, in honor of the IFOPA’s 30th Anniversary, Jeannie Peeper names each person who has faced life with FOP as a recipient of the President’s Lifetime Leadership Award.

Meet the 2018 Honorees 

August 2018 

Proposals Sought for Two New FOP Research Grants

The IFOPA announces that Letters of Interest are being sought for the 2018 Million Dollar Bike Ride Pilot Grant Program. Two FOP grants valued at $37,633 each are available. 

September 2018

FOP Connect Peer Mentor Program Launches

The FOP Connect Peer Mentor Program, chaired by Nancy Sando, IFOPA Board Member, connects people with FOP, family members and caretakers with other like-minded individuals to foster friendships with a focus on support, growth and development. Learn how to apply to be connected with a mentor

October 2018

Community Fundraising Manager Joins the IFOPA Staff Team

Cathryn Roys joins the IFOPA as Fundraising and Special Projects Manager. In this role, Cathryn provides guidance and support for members of the IFOPA community as they host fundraising campaigns and events, including Team #cureFOP. She also identifies new fundraising opportunities for the IFOPA and helps ensure good communication and engagement with the FOP community and its supporters. Cathryn can be reached at [email protected] or +1 843-709-3244.

November 2018

FOP Family Gathering Draws Nearly 40 Families

Nearly 40 FOP’ers gather with 150 family members and friends, doctors, researchers, pharmaceutical representatives, and IFOPA staff at the Family Gathering in Baltimore. The Gathering provides families the opportunity to:

  • Hear presentations from the world’s leading experts on disease management and care
  • Explore new topics like emotional resilience in the face of chronic disease
  • Connect with other families to develop supportive relationships
  • Ask physicians and dentist questions in private meetings
  • Touch, try and learn about tools that other FOP families use to support independence 

Watch recordings of the presentations

IFOPA Launches Cars2CureFOP

The IFOPA offers a new way to give to the IFOPA by donating a car, truck, van, SUV, boat, motorcycle, ATV, RV, trailer or airplane. Simply visit our vehicle donation page or call 855-500-RIDE (4733) and a donor representative will guide you through the donation process.

#GivingTuesday Raises Nearly $13,000 for Quality of L.I.F.E. Awards


The community embraces #GivingTuesday giving nearly $13,000 for the Quality of L.I.F.E. Awards. A record 17 Facebook fundraisers were set up to support #GivingTuesday.

Learn more about the Quality of L.I.F.E. Awards, a $1,500 lifetime grant available to those living with FOP to support independent living. 

December 2018

FOP Biobank Opens For Participation Across the United States

The FOP Biobank collected its first samples at the FOP Family Gathering in November 2018. The Biobank is now accepting donated biosamples (blood, urine, saliva, or “baby teeth”) from anyone living in the United States. These biosamples help researchers make new discoveries in FOP, test new drugs, and look for new markers of disease (called biomarkers). People with FOP and anyone that supports FOP research can donate. Learn more and begin the donation process

FOP Community Makes Double the Difference During Year-End Appeal

A generous donor provided $60,000 in matching funds for the IFOPA’s 2018 year-end appeal, and donors took that challenge giving nearly $73,000. These funds allow the IFOPA to fund more research; support, connect and advocate for more individuals with FOP and their families; and raise more awareness worldwide. 

With so many exciting things happening in the FOP community we hope you'll stay connected. Visit us on our social channels below and sign up to receive updates


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