National Volunteer Week
As we head into National Volunteer Week, we’d like to take a moment to acknowledge the many wonderful volunteers that help the PWS community through PWSA | USA. Our volunteers help us continue striving to meet the needs of families across the country and beyond. Many parents, grandparents, siblings, and other caregivers find that volunteering in the PWS community helps them move easier through the challenges this syndrome can bring, as well as finding a supportive community. Together, we strengthen and uplift our community and our loved ones with PWS.
What types of volunteers do we have at PWSA | USA?
Family Mentors:
One of our first lines of support comes from our Family Mentors. These are parents, grandparents, and siblings who have been on the PWS journey for a while and have learned and navigated many of the challenges. They are people inspired to offer their time, their presence, their words of encouragement and connection to new families learning about the PWS diagnosis. They provide necessary information and connect families with important resources. Our family mentors bolster the strength and connection of this community and help spread the Help and Hope that PWSA | USA offers.
“Even though it’s been 20 years now, I can still vividly remember how lost and hopeless my husband and I felt when we got Ryan’s diagnosis. I remember meeting and talking to other parents and starting to see the hope. So, I love being a parent mentor because I enjoy giving back to the community that helped me, and because it is such a joy to talk to new parents and give them some reassurance. I get a front row seat at seeing parents be scared and afraid of the future turn into parents having joy in their life and enjoying their child. Some of these parents turn into amazing advocates not only for their children but for the community.” – Julie Casey
Advocates:
Our advocacy volunteers are incredibly dedicated to advancing the needs of the PWS community in the halls of legislature and offices of our representatives. They travel to their state capitals and Washington, D.C., to ensure the voices of PWS families are being heard by people who can enact necessary changes. Advocacy volunteers meet regularly, spend time educating themselves and each other on the process of democracy, and fight for the needs of the entire PWS community.
Fundraisers:
PWSA | USA is a non-profit organization that reaches into the vast corners of the PWS community to offer support to families every step of the way. From the moment of diagnosis, we are there with our Package of Hope and a family mentor, through finding the right doctors, supporting parents in the IEP process, informational webinars, online support groups, conferences, an online library of resources, in-person residential trainings, our 24-hour crisis hotline, and grief counseling at any point along the way, we are here for the community. These efforts are helped by the many volunteers who fundraise on our behalf. Whether it is through online peer-to-peer fundraising, or hosting an event, these volunteers help raise necessary funds as well as awareness, while helping build a stronger, more educated community.
Work Groups and Committees:
Some of our volunteers work behind the scenes in the Audit Committee, Executive Committee, Finance Committee, Leadership Development Committee, Research Committee, Advocacy Work Group, Communications Work Group, Professional Providers Work Group, and PWS Adult Advisory Council. They take time away from their lives to meet regularly over zoom to help discuss ideas and actions. These volunteers help steer the course of how we show up in the community.
Conferences:
Hosting a conference requires an incredible amount of planning and boots on the ground kind of work. We have the ability to host our loved ones with PWS during these conferences because of the amazing volunteer staff that supports this community. Not only do they take the time to be there for our loved ones during the conference, but they also participate in training beforehand so they can offer the kind of support our loved ones require.
How can I become a volunteer?
If you are interested in becoming a volunteer for PWSA | USA, please reach out through our email at info@pwsausa.org and let us know what you’re interested in volunteering for.
Why I Volunteer…
“I started volunteering for PWSA | USA for my son – he’s my inspiration to give back to this amazing community. Once I got involved and started meeting more and more wonderful PWS families, my inspiration morphed to include all of those living with PWS. I want their lives to be better and will work to help make that happen.” – Elaine Towle, Mom to adult son, James
“I volunteer for PWSA | USA because it’s an organization that truly, deeply cares about the people and families they serve. It is an honor to be a part of an organization that in the face of so many obstacles, provides such high quality and comprehensive care, supports, and programs to the PWS community.” – Kasey Bedard, Ph.D., Behavior Analyst
“I believe in the mission of PWSA | USA and believe that together we can make a difference in the lives of people with PWS and their families. Volunteering allows me to give back to an organization that has made a positive impact on my family.” – Denise Servais, PWSA | USA Board Member
“Volunteering for PWSA | USA plays a crucial role in advocating for such a vulnerable population. Spreading awareness and creating best practices can ensure a higher quality of life for people with PWS and they are so deserving of quality services and exceptional care! I am honored to do my part to create a more educated and compassionate community.” – Patrice Carroll, LICSW, Latham Centers
Thank You Volunteers!
We are truly appreciative of our volunteers. Our gratitude for your hard work, your dedication, and your commitment to this organization is endless. Thank you for showing up for your community and for helping us support the many families and loved ones with PWS. We thank you!
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.