I’m Kristi Gonzales, Board Chair of the IFOPA, and mom to 10-year-old AJ. AJ was diagnosed with FOP when he was 2 years old.
I would also like to introduce you to Hope Newport, Family Services Manager, at the IFOPA. Welcome to the FOP community.
Partnering together, the staff at the IFOPA and the FOP community support each other through the challenges individuals and families face on a daily basis.
As the mom of a young boy with FOP, I think what is important to remember is that we have all been in your shoes. We are here for you. There is no better way to navigate through this new world than with the support of the IFOPA and other families. We have learned to embrace “Never Give Up” as our motto! And in our family, we don’t let our son’s diagnosis define him, he is so much more!
We want you to know that the International FOP Association (IFOPA) is a resource you can rely on. The IFOPA, founded by individuals with FOP, is guided by a Board of Directors made up of community members, staffed by a team of professionals, supported by the top medical and scientific advisors and connected to a vast network of families working together to support each other.
We hope you’ll take the time to read the materials included in this packet to learn more about our education and support programs. You’ll see that we offer a range of resources to educate you about disease management and care, FOP research, and clinical studies and trials. We also provide resources to support your emotional well-being and assist you in the vital role you play as an advocate for your or your loved one’s needs. As the Family Services Manager, Hope is always available by phone (including WhatsApp), via social media or email to answer any questions you have about the resources included in this packet.
We understand that the news of a FOP diagnosis can be an emotional experience and that the amount of information you find online may feel overwhelming. Our hope is that this packet will help alleviate that feeling by providing you with a toolkit of essential resources for navigating life with FOP and connecting you to a life-long relationship with the IFOPA and the FOP community.
We often hear from families that connecting with another parent or individual with FOP is the most reassuring step of adjusting to a new diagnosis. Please contact IFOPA at [email protected] or +1 (785) 294-1607 to get connected to one of the many online support groups or be connected to a community mentor for one-on-one support.
Please reach out to us if you need assistance or have any questions.
We can help. We want to help. It’s the reason we exist.
Our Warmest Welcome,