Gear up for Awareness Day with NEW Awareness Day T-Shirts

Two shirts are available in a variety of colors and styles:

- "See Me" t-shirt for people living with FOP

- "United in Hope" t-shirt for family members, friends and other FOP community supporters

Order by April 1 so you're sure to have your t-shirts and sweatshirts by April 23.

Watch our eNewsletters and social media for more Global FOP Awareness Day details coming soon.

Registration now open for the FOP Italia Symposium and Family Meeting which will be held as an in-person event on Saturday, April 20 at the NH Hotel in Torino, Italy.

More Information

Questions? Contact Massimo Alfieri at [email protected] or via WhatsApp +393355989960

The First Annual Ethan's Walk event* is hosted by Kimberly Schultes in honor of one of her students, Ethan, who lives with FOP.

Location: Route 18 Park, 1945 4-H Park Road, Centreville, Maryland (Event will be held rain or shine)
Tickets: $25 for adults, $10 for children and $50 for a family of four. Each ticket includes a t-shirt.

To register or for more information, visit ifopa.org/ethans_walk

* Not a sponsored event of the Queen Anne's County Public Schools

Join community members Jon Krisman (father of a child with FOP), Sunil Ladwa (father of a teen with FOP), and Yicela Paola Quinto Bolan (adult with FOP) and Jimmy Javier Moreno Bolaño (spouse of Yicela) as they share how having personal and community support networks have positively impacted their journeys with FOP. We'll even discuss how support networks

Register

In the first of three sessions in this series, we will focus on the impact of trauma and the different ways that children in the FOP community (those living with FOP as well as their siblings) may be exposed to traumatic experiences.

For many children with FOP and their siblings, trauma is an unfortunate, and at times unavoidable, part of childhood. Whether that trauma is the result of a medical experience, a loss of movement or occurs by witnessing or interacting with a medically compromised sibling, it can have lasting effects on the individual. This three-part series will focus on the impact and stages of healing for children who experience trauma, as well as ways for caregivers to manage stress reactions and safeguard themselves from emotional exhaustion.

It is encouraged to attend all three sessions, but not necessary.

Presenting the series is our guest speaker Susan Dannen. Susan is a Licensed Independent Social Worker with over 25 years of experience in the mental health field.

Professional translation will be available based on participant interest so register early.
AI (artificial intelligence) translation will be available. Click the registration link for a full list of languages.

Register now

Booking for FOP Friends' 5th Conference and Family Gathering is NOW LIVE! It promises to be another packed program with presentations, clinical appointments, activities, but most importantly, opportunities for friends to connect. More information 

Questions? Contact Helen Bedford-Gay at [email protected]

In the second of three sessions in this series, we will examine the stages and steps of healing for children (those living with FOP as well as their siblings) in the FOP community who have experienced trauma.

For many children with FOP and their siblings, trauma is an unfortunate, and at times unavoidable, part of childhood. Whether that trauma is the result of a medical experience, a loss of movement or occurs by witnessing or interacting with a medically compromised sibling, it can have lasting effects on the individual. This three-part series will focus on the impact and stages of healing for children who experience trauma, as well as ways for caregivers to manage stress reactions and safeguard themselves from emotional exhaustion.

It is encouraged to attend all three sessions, but not necessary.

Presenting the series is our guest speaker Susan Dannen. Susan is a Licensed Independent Social Worker with over 25 years of experience in the mental health field.

Professional translation will be available based on participant interest so register early.
AI (artificial intelligence) translation will be available. Click the registration link for a full list of languages.

Register now

In the third and final session, we will look at ways for caregivers to manage stress reactions and safeguard themselves from emotional exhaustion while caring for children who have experienced trauma.

For many children with FOP and their siblings, trauma is an unfortunate, and at times unavoidable, part of childhood. Whether that trauma is the result of a medical experience, a loss of movement or occurs by witnessing or interacting with a medically compromised sibling, it can have lasting effects on the individual. This three-part series will focus on the impact and stages of healing for children who experience trauma, as well as ways for caregivers to manage stress reactions and safeguard themselves from emotional exhaustion.

It is encouraged to attend all three sessions, but not necessary.

Presenting the series is our guest speaker Susan Dannen. Susan is a Licensed Independent Social Worker with over 25 years of experience in the mental health field.

Professional translation will be available based on participant interest so register early.
AI (artificial intelligence) translation will be available. Click the registration link for a full list of languages.

Register now

The IFOPA's Peer Support Group for English-speaking adults with FOP is an opportunity for community members to meet monthly for a 90-minute session moderated by counseling psychologist Dr. Al Freedman, dad of a son who lived for 26 years with another rare disease.

Now in its second year, the group provides opportunities for connection between community members by creating a safe space for socializing and sharing challenges related to life with FOP. The group moderator, Dr. Freedman, will offer suggestions and techniques to help navigate challenges that are brought up in group discussions. 

This group is open to any adult with FOP (18+) no matter where you live. However, due to the conversational nature of the meeting, participants must be able to speak and understand English. The group meets monthly from Noon to 1:30 pm EDT / 18:00 to 19:30 CEST.

Register

Whether you're a parent or a spouse/partner, caring for a loved one with FOP is a unique experience that many people can’t relate to. You deserve a community that understands your life and encourages you through the highs and lows. In our new monthly FOP Caregiver Peer Support Group, connect with fellow caregivers to get questions answered, share your experiences, and support each other as you support your loved ones.

This group is open to any parent or spouse/partner of an individual living adult with FOP (18+) no matter where you live. However, due to the conversational nature of the meeting, participants must be able to speak and understand English.

Each session is moderated by counseling psychologist Dr. Al Freedman, dad of a son who lived for 26 years with another rare disease. Al, who has been working with the FOP community since 2022, will offer suggestions and techniques to help navigate challenges that are brought up in group discussions. 

Register