LEADERSHIP

Above our many current or past members of our Board of Directors at PSC's 2018 conference in Atlanta, Georgia. A family social excursion to the aquarium captured both our leadership - and the whale of an impact we hope to make!  

PHACE Syndrome Community's current Board

of Directors(click link for each person's bio)

 

PHACE Syndrome Community launched in the Spring of 2013 with the 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

We are excited to have an opportunity to positively impact the future of PHACE support and research

and look forward to working with the many PHACE families and supporters for years to come.

Note: All Board Members and Officers are unpaid volunteers and receive

no financial gain from their service to PHACE Syndrome Community, Inc.

 

BOARD OF DIRECTORS BIOGRAPHIES

Paul Butera - Secretary

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.

 

Mary Alice Kaspar

Hometown: Austin, TX

Mary Alice Kaspar brings more than two decades of communications experience to the PSC and enjoys helping organizations of all kinds tell their stories. She’s founder and principal of a boutique PR consulting and writing firm. Prior to that, she spent many years in the news industry where she received accolades including first place awards for news and feature writing from the Texas Press Association, in 2002 and 2003, respectively. She was also named “Best Print Reporter” in Austin by the local chapter of the Public Relations Society of America. In 2016, she was named an official finalist in Austin Under 40 Awards, which honors the city’s most influential young professionals.

Mary Alice received her Bachelor’s in Journalism and Certification in the Business Foundations Program from the University of Texas at Austin. She is a member of various civil and professional organizations, as well as founding board member of PHACE Syndrome Community. She’s in the process of creating a children’s book for kids with PHACE as a way of making their journey more informed, and hopefully, a bit easier. 

 

Anna Kerr

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. Her most recent publication titled, Memorable Messages Parents of Children with Vascular Birthmarks Receive from Others: Implications for Stigma and Identity, explored how comments from others influence parents’ perceptions of their own and their child’s identity.

 

Michael Kotyk - Vice President

Hometown: Pittsburgh, Pennsylvania

Michael is husband and father to two great kids, Aidan and Addison.  The PHACE Syndrome Community (PSC) is an organization near and dear to his heart, as daughter, Addi, was diagnosed when she was 9 days old. Before the PSC was formed, Michael and his wife traveled to Milwaukee for various PHACE conferences to learn more about PHACE and form friendships with families who also had a child with PHACE.  This community has been an invaluable resource for the Kotyk family.

 

Michael, owner and founder of Over the Bar Bicycle Café in Pittsburgh, is an avid cyclist, restaurateur, and landscape architect.  Michael also serves on the Bike PGH board, which promotes safer cycling on the streets of Pittsburgh.  He organizes and hosts the Race for PHACE in Pittsburgh, which in the last four years has raised over $50K for the PSC.   He looks forward to the continued growth of the PSC and is passionate about helping the organization reach its fullest potential.

 

Jerri Lauffer - President

Hometown: Pittsburgh, Pennsylvania

Jerri is the Practice Coordinator for a Chiropractic and Health & Wellness Center, a field in which she has spent the last decade passionately helping patients gain knowledge as they traverse their own health journeys.


Jerri first became aware of the PSC almost a year after her daughter was diagnosed. The PSC was still in its early years and because of the assistance it needed, she wanted to use her organizational and communication skills as well as compassion to make the PSC the “go-to” place for all PHACE related questions. Her personal mission it to help further the PSC by strengthening the relationships within the medical community, while instilling core values and reaching out to families who may feel their lives unraveling when their child is first diagnosed.

 

Dominic Lombardi

Hometown: Boston, MA

 

Dom Lombardi is an Information Technology leader with a specialization in information business and IT risk management, infrastructure, and operations within the healthcare sector. A former English and philosophy educator turned technologist, Dom is passionate about the point where people intersect with technology and how innovative technology solutions address organizational needs. Dom brings his passion for helping PHACE families and his skillset in IT to the PSC. 

 

As the proud father of child with PHACE, he has attended previous PSC Family Conferences and knows the value of connecting with other PHACE families.

 

He looks forward to moving the PSC into the next phase of serving families with improved online services. 

 

Jen Meints - Past President (2013-2014)

Hometown: Lincoln, NE

Jen married her high school sweetheart, and they have been together for 25 years and have three children: Emilee, Grace, and Jack. By day, Jen works for the Autism Center of Nebraska as a Coordinator for the Employment Division. She also currently serves as the board president for The ARC of Lincoln and serves at the appointment of the Governor on the Planning Council for Developmental Disabilities for the State of Nebraska. Additionally, Jen serves on the board for the Advocacy Partnership for People with Special Needs (APPSN) and on the advisory council for Assistive a Technology for Nebraska.

 

Passionate about helping her daughter Grace, Jen is a founding member and past Board President of the PSC and continues to serve on the board. She is excited to help make a positive impact in the treatment and care of those diagnosed with PHACE Syndrome.

 

Steven Russakoff

Hometown: Seattle, WA

Steven is the parent of a child with PHACE Syndrome. When his daughter was diagnosed in 2007, there was almost no information about PHACE Syndrome and hardly anyone to speak with or get answers to any question about treatment.

After meeting some families in similar situations at a NOVA Conference in Cincinnati, Steven and his wife joined these other families who wanted to create a place where people can turn to for information and help educate doctors and help doctors learn more about PHACE. The PSC journey has been slow and steady, but we are making a difference since we began and will continue to make a bigger impact as we grow.

 

Jill Salas - Past President (2015-2018) & Treasurer

Hometown: Noblesville, IN

 

As a mom of a daughter diagnosed with the H, A, C and (S) of PHACE syndrome, Jill is honored to have the opportunity to volunteer her management and sales skills to the PHACE Syndrome Community. These skills coupled with her intimate insight and passion for the PHACE journey motivates her desire to work with my partners at the PSC. Jill is a founding member of the PSC and past Board President.

 

With the PSC Mission as our guide, Jill is excited to be part of an organization that positively influences the care, treatment and support of those diagnosed with PHACE Syndrome and their families.

 

Dr. Dawn Siegel

Hometown: Milwaukee, WI

Dr. Siegel is a pediatric dermatology at the Medical College of Wisconsin in Milwaukee, WI. She is dedicated to teaching and is the pediatric dermatology fellowship director. Dr. Siegel has a long-standing interest and expertise in genetic skin syndromes. She is a founding member and scientific co-chair for the Pediatric Dermatology Research Alliance (PeDRA), serves as co-director of the Neurofibromatosis and RASopathy clinic at Children’s Hospital of Wisconsin, and works on the Medical Advisory Committee for the Costello Syndrome Family Network.

 

Dr. Siegel also serves as Director of PHACE Syndrome International Clinical Registry & Genetic Repository and is a current member of the PHACE Syndrome Community Medical Advisory Board. She is working to find the cause of PHACE and to learn more about the history of PHACE throughout childhood and into adulthood. She has co-authored 25 articles on PHACE syndrome.

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