It’s important to FOP research that everyone who can participate in the Registry enrolls. Nicky Williams explains why she enrolled her daughter.

The FOP Registry is a global, voluntary database that collects disease and quality-of-life information from individuals with FOP or their caregivers through a secured web portal. Now available in six languages (the French translation was launched in June 2017), the IFOPA encourages everyone in the FOP community to participate in order to expand our knowledge about FOP and to help researchers study and develop new medicines.

Nicky Williams completes the FOP Registry enrollment form and follow-up surveys on behalf of her daughter, Isla. She feels that Isla's participation in the FOP Registry will benefit the broader FOP community.

“As a parent, there is not a great deal that can be done to reduce the progression other than keeping your child safe,” Nicky explains. “Completing the Registry is one way of hopefully making a difference.

“We all have a part to play,” she continues. “The collection of data collated in the Registry is a powerful tool that can be used to better aid research and understand FOP. It only takes roughly one hour of your time every six months, yet the impact of having this data is huge.”

Nicky hopes the information gathered by the Registry inspires researchers to ask more questions about FOP, specifically how and why it varies from person to person. She’s also optimistic the Registry will be used by health care professionals to better understand FOP and to better support their FOP patients.

“I anticipate awareness of its existence growing as more researchers begin utilizing the data,” she concludes. “I look forward to receiving reports from the IFOPA on how the data is being used in the future.” 

In addition to being mom to Isla who is three, Nicky is a Trustee of FOP Friends and works part-time as a Marketing Manager. Her partner (who she describes as "awesome") works for a large pharmaceutical company and has two lovely boys who are like big brothers to Isla. Nicky is also a member of the FOP Registry Patient Advisory Board.

To learn more and enroll in the FOP Registry, click here.