APF Staff

Note from Nicole Castellano

Over the past several months, as I’ve focused on recovery and healing following major health challenges. Many of you have reached out with messages of kindness and encouragement. I want to thank you from the bottom of my heart for your continued support. The outpouring of compassion from our porphyria family has strengthened my resolve and exemplifies how extraordinary this community truly is.

While I had hoped to return to my full role by now, ongoing medical complications have made it necessary for me to take more time to fully heal. During this time, the Board of Trustees — led by Paul, along with Warren, Desiree, James, Diana and Ron — has worked tirelessly and devoted countless additional hours to keeping the APF strong and ensuring that our mission continues without interruption. Desiree, in particular, has carried an extraordinary load — giving her all to keep the APF moving forward with the strength and resilience she’s always shown. I’m deeply grateful to the entire Board for their dedication, leadership and compassion throughout this time.

Because this recovery has taken longer than anticipated, and the day-to-day demands of leadership must continue, the Board has made the thoughtful decision to bring on a new Executive Director, Tom Pletkovich, who brings extensive experience, strong leadership, and a deep commitment to our mission. I’m grateful for the Board’s care in finding someone capable and compassionate, and I truly look forward to collaborating with Tom when I return.

I’ve learned so much from this experience — especially through the incredible collaboration with our Scientific Advisory Board, the many experts and partners who share their time and knowledge with the APF, and the patients and caregivers who continue to teach us every day. Working alongside such dedicated individuals has been both humbling and inspiring, and it has deepened my commitment to advancing education, awareness, and care for everyone affected by porphyria.

As both a patient and a leader, I’ve been honored to help guide an organization that has always upheld a patients-first, patient-driven philosophy — one that places awareness, education, advocacy and progress at the heart of everything we do. Over the past two years, I’ve been proud to help foster new levels of collaboration and connection across our community — bringing patients, physicians, and industry together in meaningful ways that deepen understanding, strengthen support, and enrich how the APF engages with those we serve.

I’ve also been deeply moved by the messages and support I’ve received from our Scientific Advisory Board members, Membership Advisory Board participants, industry partners, patients, and caregivers. Hearing how the APF’s programs have touched lives and provided real help to so many has shown me that the hard work, dedication, and shared impact we’ve built together are truly making a difference.

Regards,

Nicole Castellano

From our new Executive Director, Tom Pletkovich

It is a privilege to join the American Porphyria Foundation as the Executive Director. I am honored to lead and sustain the Foundation’s mission to improve the health and well-being of individuals and families affected by Porphyria. Our steadfast commitment to education, advocacy, support services, and research aimed at the prevention, treatment, and cure of the Porphyrias will drive our efforts to meet the unmet needs of patients and healthcare professionals. I would like to extend a special thank you to Nicole and Desiree, both of whom have worked tirelessly to position APF for continued and future success.

My most recent decade at Pierre Fabre Pharmaceuticals included leadership roles leading teams dedicated to supporting patients and physicians managing rare diseases. Earlier in my career, I held leadership positions across sales, marketing, government affairs and professional affairs with Johnson & Johnson and GlaxoSmithKline. Throughout this journey, I have been a committed advocate for patient communities.

On a personal note, I am the proud father of two thriving daughters, father-in-law to two brilliant sons-in-law, and grandfather to three precious grandchildren. I enjoy international travel, golf, and am an active member of several art museums and presidential libraries.

I welcome the opportunity to connect. Email: Tom@porphyriafoundation.org

Warm regards,

Tom Pletkovich