APF Staff


It is my honor and privilege to serve as the new Executive Director of the American Porphyria Foundation. As a patient myself, I understand the pain, isolation, frustration, fear, and havoc that porphyria can wreak in the lives of patients and families. I relied on the APF to guide me through my porphyria journey. Now, I’m extremely thankful to pay it forward, and I greatly appreciate the opportunity to serve you. I would like to thank our co-founder, Desiree Lyon, and our Board of Trustees for entrusting me with the responsibility to continue the crucial work the APF has accomplished since its inception in 1983.

More importantly, I want to thank you. YOU are the reason the APF exists. If you’re new to the APF family, welcome to our special community! All of us at the APF thank you for helping us build our foundation into the largest Porphyria organization in the world. YOUR loyalty and support have brought the APF from a tiny kitchen table support group over 40 years ago to an over 17,500-member award-winning international organization serving patients, families and healthcare professionals in 120 countries. 

Your needs inspire me, our outstanding and caring staff and our selfless volunteers every day to go the extra mile to get you the help you need and deserve. We strive every day to improve YOUR Porphyria health and to enhance Porphyria education, awareness, support, and research. Most of our team members are either patients themselves or represent a person suffering from Porphyria. We are all motivated by compassion and love, guided by our founding principle of “PATIENTS FIRST!” We are constantly working on finding new ways to offer the support you need and improving our current programs to make the biggest impact for patients, physicians, research, treatments and ultimately, a cure! 

To ensure we continue to offer invaluable programs and services for you, we want to hear your feedback, suggestions and concerns. You are our purpose, and we take your needs very seriously.

Please remember you are not alone. We are here for you, and together we are stronger!


Nicole Castellano and the APF Staff


APF Team

Executive Director
Nicole Castellano

Patient Engagement Team
Paxton Cumming, Patient Engagement Coordinator
Nadene Lundmark, Administrative Coordinator

Media Team
Nicole Castellano
Andrew McManamon
Claire Richmond

Social Media Team
Amy Burke, Social Media Manager
Paxton Cumming
Tasha Alicea, Volunteer
Debra Knapp, Volunteer

Office Administration Team
Carol Hughes, Office Administrator
Imani Thomas, Executive Assistant

Member Advisory Board
Tasha Alicea
Gudrun Debes
Steve Ferry
Justin and Holly Hamilton
George Hodder
Debra Knapp
Andrew McManamon
Claire Richmond
Terri Witter

Thank you to our dedicated team of staff and volunteers - You are integral to our Mission. Your competent and compassionate efforts every day help thousands of patients, families, and healthcare professionals every year get the resources, education, support, help to spread awareness, and access to treatment and research our members and friends need. You truly are our APF Angels, and we couldn’t accomplish our mission without YOU!!