Corporate Sponsorship Opportunities
A Message from our Executive Director
At PWSA | USA, our commitment is to enhance the quality of life and empower individuals impacted by Prader-Willi syndrome (PWS). As we continue to champion this cause, we recognize the importance of collaborative efforts and the significant role that corporate partnerships play in achieving our mission.
Our aspiration is that the sponsorship opportunities showcased here will ignite a connection between your organization’s identity and objectives and the impactful work we do.
We hope that the content shared below serves as a catalyst for discussions on collaborative efforts to enhance the lives of the PWS community and further our common interests.
I invite you, our friends in the Prader-Willi syndrome corporate community, to join us in our mission. Let us explore together how we can tailor a sponsorship package that not only aligns with your corporate objectives but also contributes to the betterment of our shared community.
Stacy Ward, MS, BCBA
PWSA | USA CEO
Get in touch with us!
How Your Support will Make an Impact
PWSA | USA offers a variety of programs, services, and events that benefit the PWS community. Your support will help us continue providing these necessities to families and individuals affected by Prader-Willi syndrome.
Parent Mentoring
The PWSA | USA Parent Mentoring program is run by trained staff who connect veteran PWS parents who provide support to parents whose child has just received a PWS diagnosis. The program provides a referral source for information regarding physicians, best practices and additional support benefits.
24-Hour Support Line
Every year, we answer hundreds of calls from individuals with Prader-Willi syndrome and their family members. Recently we have extended our hours and piloted a 24-hour 365-day service that allows people to have their call answered at any time. To continue this program, PWSA | USA is seeking support to make it a permanent part of our offerings to the community.
New Diagnosis
PWSA | USA offers comprehensive support and education to families at time of diagnosis and provide factual information about PWS. We are committed to ensuring that newly diagnosed families have the most up to date research material, educational literature, counseling, nutrition, and medical information all within our Package of Hope which we have been providing to families for well over a decade.
School Success
Because PWS is a rare disease that demands special accommodations by schools, daycares, and other educational settings, PWSA | USA offers a School Success Program for parents seeking to navigate their educational systems, while advocating for their child’s rights and accommodations.
Grief Support
PWSA | USA’s grief counselor provides grief counseling and emotional support to members of the PWS community who are grieving the loss of a loved one, the grief they experience when they receive the PWS diagnosis.
Moms’ Retreat
In 2024, we look forward to hosting our 2nd Annual Moms’ Retreat! This weekend retreat is for moms and female caregivers to receive respite and engage in self-care workshops. Designed specifically for parents of children, teens, and adults with PWS, this event brings enormous value, restoration, and respite to the community.
Providers Conference
For the first time, PWSA | USA will host an unforgettable gathering, dedicated to enhancing care, sharing insights, and fostering community among PWS providers. The Providers Conference will take place August 19-20, 2024, in the beautiful city of Savannah, GA. All providers are welcome to attend and learn from colleagues and experts in the field.
Volunteer Leadership
Your support will help develop a comprehensive volunteer program that will engage and empower PWSA | USA volunteers to support the organization’s mission by serving as a volunteer. Volunteer roles will range from one-time event support to board of directors. While volunteers are not paid, PWSA I USA has a longstanding tradition of investing in volunteer training and recognition to foster a volunteer culture of passion and community pride.
Advocacy in Action
In 2024, our advocacy program will feature our 2nd D.C. Fly-In, which will take place May 13th-15th, the publication of our Voice of the Patient Report and additional external advocacy opportunities. We have also worked to establish a new grant program, which will provide travel reimbursement grants in the amount of $250-$500 to allow Advocacy Ambassadors from our Advocacy Committee Workgroup to take part in advocacy efforts and speaking engagements on behalf of PWSA | USA throughout the year.
D.C. Fly-In
PWSA | USA has committed to bringing 150 advocates from all over the U.S. to D.C. to meet with elected officials for our Fly-In event. We will host a half day deep policy dive, panel discussion with a dinner reception to follow. On the day of our hill meetings, May 15th, we have scheduled a thank you reception for our participants and members of congress in the Longworth House Office Building. There, we will present awards, view a trailer to a new PWS documentary entitled “The Life You’re Given” and live-stream via zoom so our PWS community not in attendance has an opportunity to participate. We look forward to bringing the PWS voice to Capitol Hill during PWS Awareness Month and, for the first time, celebrating PWS Awareness Day, May 15th, together in person.
Clinical Trial Education and Engagement Program (CTEEP) Program
With the increasing commitment to patient-focused drug development (PFDD) by the FDA and patient engagement in translational research, there is a significant opportunity to improve patient engagement and experience in PWS specific clinical trials. PWSA | USA’s CTEEP Program includes general and specific clinical trial education through accessible webinars, regular patient engagement through our robust social media platforms, monthly clinical trial update via our widely distributed Pulse e-newsletter, trial specific educational blogs to engage the wider PWS community and most importantly, direct access to our dedicated advocates in our Advocacy Work Group.
ECHO 4 PWS
The vast majority of the PWS community is medically under served. The individuals who can access expert endocrine care still lack expert care in other specialties such as gastroenterology, orthopedics, behavioral therapy, and psychiatry to name a few. Through the ECHO Program, access to locally trained specialists will increase, decreasing disparity in the healthcare delivery. Additional benefits include rapid dissemination of best practices, improved quality and safety of care, and reduced variability in care of persons with PWS. PWSA | USA launched our ECHO 4 PWS program in May 2023, and we look forward to continue offering this important educational tool to our community.
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.