PHACE Syndrome Community Board of Directors:
We are excited to have an opportunity to positively impact the future of PHACE syndrome through support and research.
We look forward to working with the many PHACE syndrome families and supporters for years to come.
Ann Buneo, President Hometown: Clifton Park, NY Ann is the Product Leader for enterprise High Performance Computing at General Electric. She creates the strategic vision for implementing state-of-the-art technology used in the design and optimization of GE’s healthcare, energy, and aerospace products. Ann received her B.A. in International Relations from Texas Christian University and M.B.A in Supply Chain and Market Logistics from the University of Dallas. She holds 7 Levels of product management certification from the Pragmatic Institute. Ann began her PHACE Syndrome journey in 2019 when she discovered the PHACE Syndrome Community online, which led to her PHACE diagnosis and helped her connect with PHACE experts. She has the H, A, C, and E aspects of PHACE. As a member of the PHACE Syndrome Community Board she seeks to spread information, support, and connection to other adults with PHACE who may lack access to resources or appropriate medical care.
Jeannie Fuglesten Biniek, PhD - Treasurer Hometown: Alexandria, VA Jeannie is passionate about helping people understand and navigate the health care system. As a health economist, she focuses on conducting timely, policy-relevant analyses, with the goal of developing data-driven approaches to pressing national health policy issues. As the parent of a child with PHACE, she understands the challenges that come with managing a rare condition, including coordinating care and educating providers. She is honored to serve on the PSC board and is excited to work to extend the organization's resources and support to families affected by PHACE.
Anna Kerr, PhD - Secretary Hometown: Athen, OH Dr. Kerr received her PhD in Communication from the University of Kentucky and is currently an Assistant Professor at Ohio University’s Heritage College of Osteopathic Medicine. As a communication scholar, her teaching and research focus on improving communication and decision making in healthcare. Dr. Kerr’s primary research aims to improve the experiences of caregivers caring for a loved one with a chronic, serious, or life-threatening condition. Dr. Kerr’s research exploring the experiences of parents of children with birthmarks has been presented at international and national conferences and has been published in peer-reviewed journals. In 2015, her research with the Cincinnati Children’s Hospital Hemangioma and Vascular Malformation Center was awarded a Top Paper award by the National Communication Association.
Paul Butera Hometown: North Kingstown, RI Paul is the Senior Director of Operations at Toray Plastic America, where he has demonstrated skills in Operations Management, Polymers, Plastics, Coatings, and Root Cause Analysis for more than twenty years. In this role, Paul leads a production facility of more than 200 people with outstanding profitability, efficiencies, and excellent safety and environmental performance. Paul holds a BS in Chemical Engineering from Virginia Tech and an MBA from Bryant University. Paul enjoys spending time outdoors and touring the National Parks with his family. Paul and his wife Erin have been married for twenty years and have three children, Allison, Ryan, and Lena. Paul’s youngest daughter, Lena, was diagnosed with PHACE Syndrome in 2007. Paul has been a member of the PHACE Syndrome Community board since 2016.
Dr. Denise Metry Hometown: Houston, TX Dr. Metry is an academic pediatric dermatologist who has practiced in Houston, Texas for more than 20 years. She developed a passion for vascular birthmarks, especially infantile hemangiomas, early in her training. She is a founding member of the Hemangioma Investigator Group with whom she has engaged in collaborative research resulting in >100 publications. Some of her career highlights include organizing the first PHACE Syndrome research and family meeting in 2008, which resulted in diagnostic criteria for the syndrome and began the PHACE Syndrome Community. She also recently led an expert consensus to establish diagnostic criteria for LUMBAR syndrome. She continues to be engaged in multiple efforts dedicated to furthering our understanding of hemangioma syndromes. She holds leadership positions in the Society for Pediatric Dermatology and the Pediatric Dermatology Research Alliance. Dr. Metry’s favorite part of her career has been her special relationships with her patients and their families. In her free time, she loves spending time with her husband, 2 boys that are verging on adulthood, and mini Goldendoodle Bela. Her favorite place in the world to be is Telluride, CO where she enjoys escaping from the heat of the Houston summer to go on hiking adventures.
Whitney Pacheco Hometown: Vallejo, CA Whitney has a long history of volunteering and fundraising dating back to her childhood. Her interest in non-profit work started with helping her mother organize fundraisers for the American Cancer Society and continued with volunteer work for various animal rescue organizations during her early adulthood. After owning a successful Wedding Photography business for 5 years, she took a break to focus on starting a family. In 2014, Whitney and her husband welcomed their daughter Mira, who was diagnosed with PHACE Syndrome at 5 weeks of age. Since then, Whitney has developed a passion for spreading PHACE Syndrome awareness and for connecting with new PHACE families to support them during the difficult first months after diagnosis. She is currently the owner of a wholesale gift business, and enjoys spending time on the Bay Area beaches with her family, which now includes their son Max, who was born in 2019. As a PSC Board Member, Whitney hopes to use her artistic and marketing talents she developed as a small business owner to create new fundraising opportunities. She also seeks to foster a culture of support for new families as they navigate their PHACE Syndrome journey.
Erin Perry Hometown: Woodridge, IL Erin is a Board-Certified Registered Nurse Care Manager working at Advocate Good Samaritan Hospital in Downers Grove, Illinois. She works on all inpatient units and the emergency room coordinating care, educating patients and caregivers, advocating for patients and connecting them with resources they need to stay well after discharge. Erin and her husband Ken met swimming in college at Illinois Wesleyan University. They have 2 sons Ryan born in 2008 and Connor (diagnosed with PHACE Syndrome) born in 2013. Erin is honored to be a Board of Director for the PHACE Syndrome Community and hopes to raise awareness about PHACE Syndrome and the PSC and support patients and families affected by the rare Syndrome. Their family has seen first-hand the lack of knowledge about the syndrome and different symptoms associated with it. She hopes to have an active role in advancing the knowledge of symptoms, diagnosis, and treatment to improve care for their son Connor as well as all others affected.
Britta Scheffer Hometown: Reno, NV Britta is a recently retired public educator with nearly 30 years experience and has an immense passion for teaching. If she doesn’t know something, she will find out more about it. In her spare time, she is an outdoor enthusiast. She enjoys snow skiing, hiking, walking, reading, and traveling. She also volunteers in the public schools. She is a wife and mother of two, Will and Annelise. Annelise was diagnosed with PHACE at 8 weeks of age. The Scheffer family travels to visit pediatric specialists. Though Reno is not a “small” town it lacks pediatric specialists, and most physicians have no prior knowledge about PHACE. Furthermore, most of Nevada is still rural. Britta hopes to help educate pediatric physicians and families in smaller communities about PHACE.
All Board Members and Officers are unpaid volunteers and receive no financial gain from their service to PHACE Syndrome Community, Inc.
All individuals who are interested in being considered for a Board of Director position, or a Committee position, are asked to fill out the application for which you are interested.
STAFF
Moureen Wenik
Community Program Manager
Hometown: Willow Grove, PA
The PHACE Syndrome Community launched, and became a 501(c)3 in the Spring of 2013 with the following founding board members:
Adriane Baylis
Dr. Beth Drolet
Cristina Camacho
Mary Alice Kaspar
Karen Kenkle
Jennifer Meints
Dr. Denise Metry
Dr. A. David Russakoff
Steve Russakoff
Jill Salas
Andrew Ziffer