At PWSA | USA, we are consistently impressed with how our families show up in support and spread awareness of our rare disease. Whether we’re speaking in a small town classroom or presenting from podiums on a national stage, every presentation, every shared pamphlet, every question answered, brings more awareness and safety for our loved ones in our communities.
PWS Mom and advocate, Heather James (mom to Giovani), has been a valuable part of this awareness. In May of 2024 she delivered a presentation on PWS to her local Kiwanis club, Kiwanis Club of Texarkana. Heather had not previously shared her son’s diagnosis outside of her immediate circle. This moment, a public declaration of the rare disease her family lives with, had a ripple effect still felt today.
As a result of her first presentation, PWSA | USA was invited to apply for, and ultimately received, a grant through the Kiwanis Club. As with all grants and donations to our organization, the funds help us to continue to provide critical support to our families.
Recently, Heather and PWSA | USA had the opportunity to present to the Kiwanis Club again, this time updating the club on the impact of their grant support. Included in this presentation was a summary of our accomplishment with highlights from our annual report and valuable information provided by Elaine Towle and Melanie Zalman, PWSA | USA staff members.
In July of this year, the Kiwanis Club of Texarkana honored Heather as a “Rising Star.” Included in their announcement on Facebook, the club stated, “Her creativity, dedication, and innovative ideas have made a big impact in raising funds and creating opportunities to better serve the children of our community.”
Melanie Zalman, our Director of Community Development, submitted this volunteer spotlight to recognize Heather James. Melanie stated, “I’d like to spotlight Heather’s volunteerism and community spirit in using her PWS story as a springboard to raise awareness and funds to help the broader PWS community. Heather is passionate, diligent, and a hard worker. Her willingness to be vulnerable and to present to her civic group as a part of PWS Awareness month last year was a meaningful way for her to share her PWS journey with her extended circle. They immediately became supporters of PWSA’s mission. I know Heather’s desire to raise awareness and funds for PWSA will continue as “Geo” gets older. It’s wonderful that she’s already making such a big difference in her community!”
Heather’s work is a great example for ANYONE who is a part of a Rotary, Kiwanis, Women’s Club, Church Group, or other community service organization. If you’d like to invite a representative from PWSA to speak (virtually) or would like help customizing a presentation you can make for your community, please reach out to us!
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.
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.
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.
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.
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.