“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” – Margaret Mead
On June 24, 2023, the last day of PWSA | USA’s 37th National Convention, seven individuals who have gone above and beyond to not only spread the mission of PWSA | USA, but who work on behalf of the entire PWS community, were recognized with PWSA | USA’s 2023 Volunteer Awards.
Research Star Award
Presented to: Ann Manzardo, MSCR, PhD, Associate Professor, Department of Psychiatry & Behavioral Sciences, University of Kansas Medical Center
Ann Manzardo, MSCR, PhD is a behavioral pharmacologist with over twenty years of experience in translational research and statistical analysis of psychiatric disorders focusing on risk factors, etiology, course and co-morbidities of alcoholism and addictions. She has advanced training and experience in genomic research using advanced genomic technologies including biostatistics and bioinformatics, structural and functional microarray and sequencing (gene and transcriptome) analysis as applied to the genetics of alcoholism, Prader-Willi syndrome, autism and other disorders. Most recently, she has helped to create the intensive incident tracking report which allows us to collect information on the more serious incidents that families are encountering. When the call came, she stepped up to co-chair the CSAB alongside Dr. Scheinman. Currently, she is working with the PWS Acuity scale workgroup to analyze the data collected from Professional Providers on their support systems. Her commitment to improving the lives of people with PWS and their care givers is invaluable to our community.
Legislative Champion Award
Presented to: Congressman Paul D. Tonko (D-NY)
We are excited to share the recipient of our first-ever Legislative Champion Award, Congressman Paul D. Tonko. Congressman Tonko is an eighth-term member of the U.S. House of Representatives, representing New York’s 20th Congressional District in the Capital Region, including the cities of Albany, Schenectady, Troy, and Saratoga Springs.
He has dedicated his career in public service to bettering the lives of those in and outside his district with meaningful legislation that creates good jobs, strengthens the middle class, and drives economic opportunity.
Tonko is the Ranking Member of the Energy and Commerce Subcommittee on Environment, Manufacturing, & Critical Materials. In addition to serving on the Energy and Commerce Subcommittee on Energy, Climate, and Grid Security, and Subcommittee on Oversight & Investigations, he is also a member of the Committee on Science, Space, and Technology.
This past year, Congressman Tonko was responsible for fulfilling the first of three asks from our D.C. Fly-In last September, filing legislation dedicating May 15th, and every May 15th thereafter, as Prader-Willi syndrome Awareness Day in the United States of America. Not only did he sponsor this resolution for PWSA | USA, he is also supportive of our 2nd ask from the fly-in, which is to have PWS listed as a recognized topic area for the Department of Defense’s Congressionally Designated Medical Research Program. During a recent trip to Capitol Hill, Congressman Tonko expressed his interest in supporting our 3rd and final ask from our fly-in, which has been re-introduced by Representative’s Gottheimer and Bacon for the 2023 Congress. This ask is particularly special to us because our organization, alongside other stakeholders, was helpful in brainstorming its creation several years ago. Although those of you who were with us in D.C. last year new it as the Orphan Drug Mitigation Act, it is currently being proposed in the 2023 Congress as “Leo’s Law.” It proposes that pharmaceutical companies who worked to create therapies in the rare disease space during COVID receive a claw back of an additional six months of exclusivity when their drug comes to market. As if all of this wasn’t enough, Congressman Tonko has committed to assistance in ensuring PWS is added to Social Security’s list of compassionate allowances.
His unwavering commitment to help our PWS community thrive is unparalleled and it was with great pleasure that our Community Engagement Director Dorothea Lantz and several PWSA | USA advocates presented him with our first ever Legislative Champion award in-person on Capitol Hill.
Advocacy in Action Award
Presented to: Chrissy Burgstaler
Chrissy is the mother of a beautiful 3-year-old with PWS and has spearheaded PWSA | USA’s state qualifier campaign initiative. Though she is newer to our PWS community, she has already shown her deep level of commitment not only to our mission at PWSA | USA, but to enriching the lives of people with PWS. This past year, she coordinated the chapter leaders in the State of Arizona to have Prader-Willi syndrome added to the state’s definition of Developmental Disability. Alongside chapter leaders, Chrissy testified at countless committee meetings, coordinated with elected officials in the state house and senate and also worked with the governor’s office to complete this effort. While the initiative passed both the Arizona state house and senate nearly unanimously, it was not able to receive the required funding in the appropriations bill to be signed by the governor. And yet, when we spoke about the heartbreaking news, she once again asserted herself and has committed to the fight again for next year’s legislative session. Her advocacy work has inspired other PWS advocates from all over the country; and as a result, we now have this initiative being coordinated in four other states. She has been instrumental in working alongside other PWS advocates, helping them to coordinate this effort in their states, and has become a valued member of the PWSA | USA Advocacy Committee workgroup.
Family Support Volunteer of the Year Award
Presented to: Lieutenant Colonel (R) Charles Conway
Charles Conway has displayed un-wavering support and dedication in the assistance of ALL families who have a loved one with PWS. He is always amongst the first to volunteer for PWSA | USA activities and has been instrumental in recruiting fellow PWS dads, inspiring and encouraging them to participate in our community. When our PWS families are in need, he is a source of comfort, compassion and unwavering support. All of you dads who attended this year’s Convention should thank him for the idea of our wonderful Dad’s Den. He is a fierce advocate and, even through great hardship, he always has a smile on his face and continues his unwavering support our PWS community.
Hope United Fundraising Star Award
Presented to: John & Lori Lens
John and Lori Lens, who live south of Boston, are passionate about helping raise awareness and education while providing support for families impacted by PWS. Their son Hunter (age 23 with PWS) was diagnosed shortly after birth and is currently living at home and thriving with his two siblings, Hayden (20) and Abbey (18), both of whom are in college working on their degrees in biology. John and Lori have hosted the Annual Hunter Lens Golf Tournament for 13 years running, and in October of this year, they will host their 14th! They work tirelessly to raise not just money with his event, but to provide a window into Hunter’s world and to raise awareness for the PWS community. John and Lori’s devotion to raising much-needed funds and awareness through his annual event continues to inspire others in the PWS community to do more and to make the desire to help contagious. Since their first event in 2009, John and Lori have helped to raise more than $300,000 to support our mission.
Volunteer of the Year Award
Presented to: Barb Dorn, RN, BSN
Barb Dorn, RN, BSN has impacted so many lives over the course of many years and works incredibly hard to support our mission. As the mother of two sons, one of whom is 38 and living with PWS, Barb first began to display her dedication to our PWS community in 1992 when she established PWSA of WI. Since then, she has continued to dedicate her time to advocating on the state and federal level on behalf of our community. She has written countless articles, presents locally as well as at many of our National Conferences, and constantly seeks to educate and provide training for medical staff, case managers, teachers and caregivers on how to work with and treat people with PWS. She was a significant player in the fight to have growth hormone approved for our PWS population and led the charge to have Prader-Willi syndrome added to Wisconsin’s definition of Developmental Disability. She continues to assist our community and PWSA | USA, most recently by facilitating the Health Care Advocacy Webinar series and updating and editing the PWS Medical A-Z documents. Her energy is endless and her dedication to our PWS community over the past three decades has not only shown remarkable leadership, assertiveness, and integrity, but it clearly defines her deep level of compassion and commitment to PWSA | USA’s mission.