Learn how Kroger helps raise funds for PWSA of Ohio!Mission Statement
PWSA of OHIO is a chapter of PWSA-USA and is a non-profit, tax-exempt organization dedicated to providing understanding and awareness of Prader-Willi syndrome, to supporting affected persons and families, to improving the quality of their lives, and to encouraging research into the causes, management, and cure of Prader-Willi syndrome.
Organization Structure
The organization is maintained by volunteers, mainly being parents of PWS children and adults dedicated to enriching the lives of their children. Officers include President, Vice-President, Secretary and Treasurer. The Board of Directors shall consist of seven members and four officers elected by and from the membership at large. The term of Officers shall be two years. The term of directors shall be 3 years. Elections are generally held on October and the new Board of Directors then begins their office on the first of January the following year. PWSA of OHIO is a member in good standing and a chapter under the National organization of PWSA-USA. Our organization is also a member of the Ohio Association for Non-Profits and an Affiliate member of the ARC of OHIO.
Meetings
State meetings are typically held twice a year, spring and fall. Although the place for the meeting varies, the enthusiasm of the attendees remain constant. Information tables are displayed at each meeting which includes current handouts concerning Diet & Nutrition, Support and Ohio Resources. Professional speakers and topics vary with each meeting. Informal parent get-togethers maybe arranged by PWSA of OHIO at various times throughout the year and at various locations within Ohio.
Current Board Members
Jennifer Bolander – President
Sandy and Tom Giusti – Co-Vice Presidents
Jack Shiley – Treasurer
Darla Minamyer
Rob and Diane Seely – Co-Board Members
We live just outside of Dublin, Ohio and have been married for 12 years. We have five children; Justin, Kristin, Caitlin, Alisyn and Reagan. Our youngest child, Reagan, is seven years old and has Prader-Willi Syndrome. Like many parents we have had to face challenges with developmental delays, behavioral issues, and the enormous task of finding resources for Reagan.
Rob currently works for an Architectural Firm designing commercial restaurant kitchens. Diane worked in accounting for a Financial Planning Firm up until seven years ago, then became a full time advocate for Reagan. Over the past several years, we have supported several fundraising efforts for PWS. We have created literature and informational packets to promote awareness and education that we use as a tool for mass mailings and distribution to schools and throughout the community. We are participating in a sibling research project at The University of Florida and a study at Vanderbilt University that specifically focuses on behavioral issues in individuals with PWS. As board members, an area of particular interest for us is communicating with newly diagnosed families as they begin to advocate for their children. We want to educate families on where to begin the overwhelming tasks of medical testing, starting therapies, connecting with trusted experts, financial assistance, etc. We believe that by establishing a map outlining the steps needed, it would alleviate some of the obstacles as families begin their journey with Prader-Willi Syndrome.
John Youngkin and Susan Lantz – Co-Board Members
