It's the last day of 2022 and we are reflecting on all that you have helped us accomplish this year!



January – Launched year 3 of our Friendship Over Pages (FOP) Book Club.

February – Partnered with the National Organization of Rare Disorders, Eurordis, Global Genes and other FOP and rare disease advocacy organizations to raise awareness in honor of Rare Disease Day. The IFOPA's social media posts had nearly 30,000 social media impressions.

March – Hosted our first Advocacy Series programs of 2022. For the topic "College, Careers & Pursuing a Vocation" we offered a webinar, community panel and podcast.

April – Held our largest global FOP Awareness Day campaign yet with 19 countries participating from 15 FOP national organizations. The IFOPA's social media posts made 185,000 impressions and the campaign raised nearly $130,000.

Also launched the Focus on 5 Resilient Living Series teaching FOP families how to use their 5 senses to better cope with the uncertainty of FOP.

May – Hosted our first Virtual Siblings Trivia Event and our Family Services team, Hope Newport and Karen Kirchhoff, traveled to the United Kingdom to attend the 10th annual FOP Friends Family Meeting and visit with families about the Ability Toolbox – Everyday Tools for Independent Living Program.

June – The IFOPA celebrated its 34th birthday on June 8.

July – Launched the FOP Glossary because sometimes we get lost in all of the medical jargon when reading about FOP biology, research and clinical studies. The new glossary makes sense of anything and everything FOP and features a new word each week. Check it out at ifopa.org/glossary

August – Organized our first Campference, a virtual two-day summer camp for 12 children with FOP and their siblings, and 3 adults living with FOP served as camp counselors to help support the event.

Offered our 2nd Community Memorial Butterfly Event on National Grief Awareness Day to honor and remember our loved ones and friends with FOP who have passed away.

September – Hosted our 3rd In Pursuit of a Cure virtual event raising $475,000 of our $525,000 goal. This year's event funded the 3rd phase of gene therapy research at the University of Massachusetts and clinical trial support and education, including the STOPFOP clinical trial.

Also held the Advocacy Series: Adaptive Driving & Transportation community panel.

October – Held our 3rd Virtual Family Gathering reaching nearly 400 people from 35 countries. Also launched new Frequently Asked Questions pages - one on What is FOP? and one on Understanding Drug Development & Clinical Trials. Check them out at ifopa.org/fop_faq 

November – Held the 5th FOP Drug Development Forum (DDF) with more than 200 in-person and virtual attendees. The day before the DDF, we partnered with the University of Texas Southwestern Medical Center as they hosted the 2nd Traumatic HO and FOP Symposium with more than 100 attendees. Both events were held exclusively for researchers, clinicians and pharmaceutical company teams, but a major highlight of the events are the "voice of the patient" panels.

Also in November, in recognition of National Family Caregivers Month, we held 2 webinars (now available as podcasts) on supporting and empowering caregivers.

December – Our 2022 social media posts hit more than 1 million impressions and Karen Kirchhoff, Family Services Coordinator, attended the first FOP India Family Meeting sharing the Ability Toolbox program with attendees.

On behalf of the IFOPA's Board and Staff, thank you for being as determined as we are to make life better for people living with FOP. Your support makes everything we do possible!

Today is the LAST DAY to donate in 2022.

IFOPA programs and services educate, inspire and comfort people living with FOP, their families, loved ones and caregivers. Friends around the world rely on them for life-changing community and connections. And we rely on you.

We have achieved so much with you this year!

Your special year-end gift today will make an impact as we kick off 2023. I hope we can count on you once more.

Thank you and Happy New Year!

Megan Olsen

FOP Mom and IFOPA Board Chair