PWSA | USA is special because of YOU, our donors, who passionately give to support our mission. It is because of your generous gifts that we can provide help and hope through family support, advocacy, and research efforts. To celebrate and honor your generosity, each month we will spotlight a donor and their story showcasing the dedication, gratitude, and optimism that defines us as a PWS community!
Our first November Donor Spotlight is PWSA | USA Board Member John Lens, who recently held a fundraiser in support of PWSA | USA and in honor of his son Hunter who is living with PWS.
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When did you learn about Hunter's PWS diagnosis?
Hunter is 23 years old, and we first learned about PWS within the first week of his life. My wife Lori and I remember speaking to the geneticist and she said that within 10 years there would be a cure for PWS. To us it seemed like a lifetime for that to happen and in all aspects 23 years later there still is no cure and families are struggling to help provide a greater quality of life for loved ones that are impacted. We pray every day that someday an amazing medicine breakthrough would be approved to help Hunter and others like him. Unfortunately, today as we all know, there is still no cure and many families struggle like we have on providing the proper care and support system in place. Because of these challenges, our number one priority over the years has always been to provide the best quality of life for Hunter and to provide an environment that he feels he is a contributing part of society. It has not been easy and we have had many trials and tribulations, laughs and tears over the years, but I know we have a stronger family thanks to Hunter being who he is and being part of our family.
What motivates you to donate to PWSA | USA, and in your case, host a fundraising event that benefits our organization?
We enjoy donating simply to help others who need some form of assistance that otherwise would not be provided. It is the least we can do to help families like us know people do care! For the last twelve years, we have sponsored a Hunter Lens Golf Tournament every year, and over the years have raised hundreds of thousands of dollars for PWSA. The best part of the day is not to win the tournament or have the event be a “corporate sponsor feel” but instead be surrounded by families who want to help raise awareness and be part of Hunter's special day.
Is there anything you’d like to share with other families, or any advice you would like to give?
In addition to Hunter, we have two other children, Hayden (20) and Abigail (18), who are both in college studying biology with the goal of completing their education in order to help others in the medical field. Lastly, Hunter is a very determined strong young man who loves movies and working with animals. He works three days a week and is also practicing getting his drivers license. YIKES…. Everything Hunter does and accomplishes makes us as parents very proud. It definitely wasn’t easy coming to terms with his diagnosis but we immediately got him the services that he needed in order for him to thrive: PT, OT, speech therapy, and growth hormone therapy. Without these, he would not have come as far as he has.
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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.