Your November FOP Connection

November 2023 eNewsletter

This eNewsletter contains news and information for anyone living with FOP and those who care for them. This includes family and friends, caretakers, physicians, researchers and IFOPA supporters.

Clinical Trials | FOP Registry | Quality of L.I.F.E. Awards

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Don't Miss Out! 2023 FOP Family Gathering

We're just two days out from the start of the 2023 FOP Family Gathering. If you've already registered, check your email from Monday, November 13:

In-person attendees will have instructions for downloading the Mobile App
Virtual attendees will have instructions for accessing the virtual viewing platform

Not sure you can watch this weekend? As long as you're registered, you'll have access to view the sessions for 90 days. Even if you're attending virtually, you can participate in small group discussions and activities like Laughing Yoga.

View the agenda >

Don't forget that we are offering live Spanish translation and AI (artificial intelligence) translation in nearly 30 languages.

Questions? Email fopfamilygathering@ifopa.org

Join us in closing out the 2023 Family Services program offerings by registering for our community panel discussion on this year's Advocacy Series topic "Financial Planning and Government Benefits."

We're excited to welcome Jaclyn, Kimi, Patrick and Miriam to the stage to share their experiences accessing and paying for off-label drugs, vehicle conversions, safety equipment, and caregiver support. We'll also discuss tips for enrolling in government programs and how they can help families gain access to the financial resources they need!

Register to join us on December 5 at 3 pm ET and submit your questions in advance by emailing Hope Newport at hope.newport@ifopa.org

Announcing the 2023 Jeannie Peeper Award Winners

We're absolutely delighted to announce the winners of the 2023 Jeannie Peeper Awards.

President's Lifetime Achievement: Desireé Peeper

Outstanding Fundraising:

The Burgess Family

Outstanding Community Involvement: Zvi Grunwald, MD

Outstanding International Leadership:

Clive S. Friedman, BDS (Diplomate AAPD)

Inspiring Leadership: Paulina Gutierrez

Emerging Leader: Joshua R Scoble

Congratulations to each honoree and THANK YOU for all that you have done for our wonderful community.

Meet the award winners >

November is National Family Member Caregivers Month!

We are grateful for this opportunity to celebrate some of the best caregivers we know! Last November, we hosted two Zoom panel discussions featuring six caregivers from the FOP community. They had incredible insights to share!

Whether you're a veteran member of the community or a newly diagnosed family, we hope you'll take the time to appreciate the experiences our panelists shared as we discussed ways to be empowered and supported in the caregiving journey.

Listen to the podcast and access resources shared during the discussion >