PWSA l USA would not be here today without dedicated volunteers, including members of the board of directors and officers. In the early years, PWSA l USA relied solely on these volunteers to provide leadership, strengthen its financial status, develop programs, and write newsletters. After the organization grew to the point that they could employ an executive director, board members and officers continued to be a “hands-on” board. Because of these devoted individuals, PWSA l USA has grown to be an international leader in providing support, education and advocacy to persons with PWS. The leadership, guidance and sharing of their time by these past and present pioneers, has truly been appreciated.
The following are lists of board members and officers. They are listed by the years they began their service, as well as all of the positions they served in.
The 1970s
In the early years, board members also served as officers. All board members were elected by the membership. Officers were appointed and did not have voting privileges unless they were board members.
The 1980s
As the years went on, more officers served without becoming board members.
The 1990s
The 2000s
In 2007, the board of directors voted to eliminate the positions of president and vice president. It was felt the chairman of the board was sufficient in providing the leadership for the organization. There was also expansion of staff positions which was providing more assistance in day-to-day operations.
| Name | Position | Years Served | Total Yrs. Donated |
| Barb McManus | Secretary | ‘00-03 | 3 |
| Board Member | ’03 -06 | 3 | |
| Karen Goldberger | Treasurer | ‘00 –06 | 6 |
| Bob Hartnett | Board Member | ‘00-02 | 2 |
| Steve Lundh | Board Member | ‘00 –03 | 3 |
| Steve Diaz | Board Member | ‘00 –01 | 1 |
| Rob Lutz | Board Member | ’01-07, ’13-current | 14 |
| Liza Graziano | Board Member | ’02-06 | 4 |
| Carol Hearn | Board Member | ’02-11 | 9 |
| Janice Agarwal | Board Member | ’02-11 | 9 |
| Henry Lee | Secretary | ’03-04 | 1 |
| Mark Ryan | Board Member | ’03-09 | 6 |
| Don Armento | Board Member | ’04-05 | 1 |
| Steve Leightman | Board Member | ’04-13, ’17-18 | 10 |
| John Heybach | Board Member | ’04-13 | 9 |
| Julie Doherty | Secretary | ’04-current | 17 |
| William Capraro | Board Member | ’05-08 | 3 |
| Kerry Headley | Vice-President | ’06-07 | 1 |
| Board Member | ’08-11 | 3 | |
| Linda Gourash | Board Member | ’06-09 | 3 |
| Jackie Stoner-Mallow | Board Member | ’06-15 | 9 |
| Jamie Bassel | Board Member | ’07-10 | 3 |
| Bert Martinez | Treasurer | ’08-16 | 8 |
| Michael Alterman | Board Member | ’08-16 | 8 |
| Greg Cherpes | Board Member | ’09-15 | 6 |
| Michelle Torbert | Board Member | ’09-18, ’19 – current | 11 |
| Lisa Thornton | Board Member | ’09-15 | 6 |
The 2010s
| Name | Position | Years Served | Total Yrs. Donated |
| Michelle Holbrook | Board Member | ‘11-14 | 3 |
| Rob Seely | Board Member | ’13-18 | 5 |
| Michael Troop | Board Member | ’13-15 | 2 |
| Sybil Cohen | Board Member | ’13-16 | 3 |
| Tammie Penta | Board Member | ’14-current | 7 |
| Denise Westenfield | Board Member | ’14-16 | 2 |
| Treasurer | ’16 –19 | 3 | |
| Tom Noonan | Board Member | ’15 –17 | 2 |
| Tom Conway | Board Member | ’15 –18 | 3 |
| Leon Caldwell | Board Member | ’15 –18 | 3 |
| Marguerite Rupnow | Board Member | ’15 -current | 6 |
| Dan Beaver | Board Member | ’16 –17 | 1 |
| Pete Girard | Board Member | ’16 -current | 5 |
| Mitch Cohen | Board Member | ’17 -current | 4 |
| Crystal Boser | Board Member | ’18 -current | 3 |
| Kristi Rickenbach | Board Member | ’18 –19 | 1 |
| Christine Geraci | Board Member | ’18 – ’20 | 2 |
| Paige Rivard | Board Member | ’18 –‘20 | 2 |
| Pam Zambrotta | Treasurer | ’19 –current | 2 |
| Denise Servais | Board Member | ’19 -current | 2 |
| Tim Hearn | Board Member | ’19 -current | 2 |
| Matt McCleery | Board Member | ’19 -current | 2 |
The 2020s
| Name | Position | Years Served | Total Yrs. Donated |
| Jeffrey Covington | Board Member | ’20 –current | 1 |
The top 8 individuals who have served PWSA l USA for the longest period of time include:
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| Dan Driscoll (21 years) |
Julie Doherty (17 years) |
Ken Smith (16 years) |
Mary K. Ziccardi (15 years) |
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| Jim Kane (14 years) |
Rob Lutz (14 years) |
Not Pictured: Fausta Deterling (14 year) and Stewart Maurer (13 years).
In addition to the board members and officers of PWSA l USA, we want to acknowledge and thank all of the board members and officers of all of our chapters. Their time and commitment to serving their local chapter in meeting the needs of persons with PWS is greatly appreciated. Thanks to you for all that you do.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.