Rare Across America, sponsored by the EveryLife Foundation for Rare Diseases, is held every August when Congress is on summer recess and our elected officials are in their home districts. It is an opportunity for advocates to meet with their Members of Congress and staff at their in-district offices and educate them on the issues that are most important to the rare community by sharing personal stories. This year, PWSA | USA staff members and Advocacy Ambassadors had more than 20 visits with Members of Congress around the country and asked them to support bills like S932/HR1262, the Give Kids a Chance Act of 2025, which includes the re-authorization of the FDA Priority Review Program, and S752/HR1509, Accelerating Kids Access to Care Act of 2025 which requires states to establish a process for qualifying out-of-state providers to temporarily treat children covered by Medicaid and the Children’s Health Insurance Program (CHIP) without additional screening requirements. Several of our advocates included their loved ones in these visits, which is always a great experience for both the children and for our Members of Congress.
Rare Across America Meetings
On August 4th, New Hampshire advocates met with Senator Jeanne Shaheen’s staff as part of Rare Across America. Representing PWSA | USA were Advocacy Specialist Elaine Towle, mom to James, and Director of Development Melanie Zalman, mom to Josephine. The conversation focused on key policy priorities for the rare disease community, giving the Senator’s office a firsthand understanding of the needs and challenges faced by families living with PWS.
On August 7th, PWSA | USA Director of Development Melanie Zalman, her daughter Josephine (who is living with PWS), and her son Henry met in person with a staff member from Congresswoman Maggie Goodlander’s office.
It was Henry's first time at an advocacy meeting with an elected official. Congresswoman Goodlander’s policy director turned to him at the end of the meeting and asked if he had anything to add to what had been said. Henry's answer was brilliant and so poignant. I nearly burst into tears with pride for how profound his response was - so honest, so kind, so brave. I hope I can bring him to D.C. in the future for other opportunities like this, and so that he can meet other families.
The meeting proved to be both meaningful and impactful – just four days later, Melanie learned that Congresswoman Goodlander had agreed to cosponsor the Give Kids A Chance Act / Priority Review Voucher (H.R. 1262/S.932), one of the key legislative asks presented that day. This outcome is a powerful reminder that when we show up, speak out, and share our community’s needs, real change can happen.
Sarah Kasaby, PWSA | USA’s Information & Referral Specialist and mom to Khaled, attended several Rare Across America meetings with Nebraska elected officials, both virtually and in person. Below is a screenshot of a meeting Sarah and Advocacy Ambassador Paige Rivard attended on August 7th with Senator Deb Fisher.
We had a great meeting with Senator Deb Fischer and her staffer, Ted Sacasa. They remembered us from the Rare Disease Week Fly-In back in February! We discussed important legislations and shared our asks. Other moms shared their stories, and we are all grateful for their continued support.
On August 8th, Sarah and Khaled also had the opportunity to attend an in person meeting with Congressman Don Bacon’s office.
We had a great meeting with staffer Chris Garrabrandt from Congressman Don Bacon’s office! We shared our story and answered his thoughtful questions. Khaled loved his Junior Ranger packet and checking out the coins - it made his day!
PWSA | USA Advocacy Ambassador Sheri Mills and her daughter Lyra, who is living with PWS, participated in several Rare Across America meetings for the very first time with elected officials in West Virginia. Reflecting on the experience, Sheri shared:
"This was my first time attending Rare Across America, though this is my 7th time advocating with my state representatives on the federal level. This has been my most active year with advocacy, and because I have met with my Senator's staffer several times this year alone, we have formed a relationship. I joked when I saw her in July that I was back, and she told me, "No, please keep showing up." On our virtual meeting last week, she thanked me for showing up again because she has it on her list to ask my Senator to co-sponsor the Give Kids A Chance Act / Priority Review Voucher (H.R. 1262/S.932). All of my state constituents on the zoom were amazed by hearing that. This would be huge for our community, the Senator's scorecard, and bridging the gap on the divide in politics happening right now. These were all things we discussed on the call. This was the first time that Lyra could attend a meeting with me, and Dana loved that she could finally see her. She has watched her grow up in pictures over the years. I cannot say enough how important it is to keep showing up. One time is not enough. Two times is not enough. We have to keep showing up over and over again. My meeting during Rare Across America proved that. No matter how we meet, showing up continues to build relationships. Eventually we will make change. We have to keep trying."
Dorothea Lantz, PWSA | USA Director of Community Engagement and mom to Hunter, attended several virtual Rare Across America meetings with elected officials in Florida. Below is a meeting she attended, along with Advocacy Ambassador Maggie Senese, with Sen. Rick Scott’s office on August 6th.
Thank you to our dedicated staff and incredible Advocacy Ambassadors for taking the time to participate in Rare Across America meetings over the past week and a half – and for making a powerful difference for the PWS 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.