contributed by Dini Rao As I think about the importance of newborn screening, I can’t help but wonder how this would have completely changed my family’s lives. My daughter Ayoni was diagnosed with Prader Willi Syndrome late at nearly five years old. At birth, she had many of the telltale signs of Prader Willi Syndrome...
The FDA has announced its plan to conduct an Advisory Committee Meeting as part of its review of Soleno Therapeutics’ DCCR New Drug Application. The FDA convenes Advisory Committees to provide independent expert advice that contributes to the agency’s regulatory decision-making. As part of the Advisory Committee Meeting, interested community members are encouraged to share...
Question: Male, 25-years-old, unknown subtype Son, aged 25, was previously taking Propranol for blood pressure and anxiety. We were noticing increased anxiety and PCP just switched him to Lisinopril and Venlafax ER 75. Are these 2 meds found to be safe for patients with PWS?? Nurse Lynn’s Response: Unfortunately, your question is more complicated than...
contributed by Nancy Christoff My daughter, Nicole (37) has PWS and has been living independently in Senior housing (a five-minute walk from my home) for about 10 years. We’ve created a mini tailored group home without the group. I don’t know if a cat counts in the headcount – LOL. Nicole gets lots of day...
Welcome to PWS United, a podcast for the Prader-Willi syndrome community, brought to you by PWSA | USA. This podcast seeks to inform the community (and beyond) of the latest news in research, advocacy, and our family support offerings. By bringing together staff, volunteers, specialists in PWS treatment, representatives from biotech and pharmaceutical companies, caregivers,...
Contributed by Anne Fricke Trauma. Sometimes we don’t notice it in the moment. We are in the midst of the battle with our weapons ready, and it is only after we have grown accustomed to the fight that the battle rage starts to dissipate, the hum of adrenaline gives way to bird song, and our...
Exciting news for the Prader-Willi syndrome (PWS) community! Soleno Therapeutics has announced that the FDA has accepted their new drug application (NDA) for DCCR, a drug designed to treat hyperphagia in individuals with PWS aged 4 and older. This acceptance is a major first step, and the FDA has granted Priority Review, recognizing the potential...
Question: Female, 17years-old, UPD 2 Questions for you: It’s about myself for my knowledge of my condition. How many times out of ten do people with my disability start their period by themselves? And if they don’t start on their own after you take medicine to induce it, will they start on their own the...
“This event would not have been possible without our sponsors, Soleno Therapeutics, Harmony Biosciences, and Acadia Pharmaceuticals. They recognize and see the needed value for residential providers to have opportunities to invest in professional development for their staff, learn from experts, and bond with fellow provider agencies.” – Stacy Ward, MS, BCBA, PWSA | USA...
Question: Male, 3 years-old, Deletion Our son gets a rash every single time he has a fever. This started this year, and he has now been sick three times. Is this common for PWS children? He also turns red and appears to have a rash with warmer baths, but the redness subsides after about an...
We are excited to announce that PWS Connect, a brand-new podcast from PWSA | USA, is launching on Friday, August 30, 2024, across all major podcast platforms. PWS Connect will be your go-to source for the latest news, research, advocacy efforts, and family support in the Prader-Willi syndrome (PWS) community. At PWSA | USA, our...
“If you can’t feed a hundred people, then just feed one.” ― Mother Teresa By supporting PWSA | USA, you can help more than one. On August 17, 2024, we are honoring National Nonprofit Day. As a national nonprofit organization about to celebrate 50 years, PWSA | USA understands the importance of serving the community...
Contributed by Barb Dorn, RN, BSN As I began my research looking at specific health issues in the aging adult with PWS, I soon learned that there was not much information on this topic. I did find a few articles that documented clinical evidence for early signs of aging. As far as dementia, I found...
Compiled by Barb Dorn, RN, BSN People with PWS are growing old. Many of this may be the result of our increased knowledge in supporting and caring for the person with PWS. We have learned to replenish hormone deficiencies and manage their diet and food security. We have identified critical health issues and know that...
Question: Male, 29 years-old, UPD My son is currently on oxygen and is having several health issues.Our biggest concern is weight loss and finding a Dr in Florida who can help him as an adult with PWS. Nurse Lynn’s Response: Here is a general rule of thumb for weight loss for our folks: To maintain...
The school year is fast approaching for some families, and well underway for others. Whether your loved one is returning to a familiar school with familiar faces, or beginning a new adventure in an unknown place, they may be feeling a mix of excitement and trepidation. Change and the unknown can be very difficult for...
Question: Female, 35 years-old, Deletion For quite a while now, my daughter has occasional spells of burping and complaints about pain in her lower abdominal region. We have been to the Gastro doctor, and my daughter was put on Famotidine and Omeprazole. At this time, she is only on Famotidine, because it didn’t seem like...
On Friday, August 2, 2024, the PWS Advocacy Coalition submitted a petition to the U.S. Food and Drug Administration (FDA), requesting the filing and priority review of the New Drug Application (NDA) for Soleno Therapeutics’ drug, DCCR. The petition, signed by 14,271 members of the PWS community, was sent to FDA officials Dr. Tiffany Farchione...
August is National Make-a-Will Month, a time dedicated to the important task of planning for the future. At PWSA | USA (Prader-Willi Syndrome Association | USA), we are excited to mark this month by launching our new planned giving resources, designed to help you make a meaningful impact through legacy gifts. Planned giving allows you...
contributed by Jeremy Lanning My name is Jeremy Lanning, and my son, Lucas Warren Lanning, was born on 05/23/2023. He was born with Prader-Willi Syndrome. My wife Melissa and I have been married for 12 years, and our other son, James, is six. I have three children from my previous marriage. I am 49 years...
PWSA | USA partnered with TREND Community to help further PWS research through conversations. For two years, TREND collected data from Facebook group conversations to gain important insight into the issues families were facing. Please note that there was no personal information attached to the data that was collected, but merely the keywords and topics...
PWSA | USA has submitted our “Congressional Letter of Support” to the FDA with 27 signatures from U.S. Congress members! This letter pushes for urgent development and approval of treatments for Prader-Willi syndrome. A big thank you to our advocates who shared this ask during the 2024 D.C. Fly-In and to the team leads who...
contributed by Amy McDougall (mom to Noelle, 21) Our daughter has always been an independent spirit: bright, organized, willing to advocate for herself, and preferring to decide between choices. However, she also struggles greatly with hyperphagia, which can completely “short-circuit” her logical problem-solving skills. We certainly dreamed of a future in which a medication would...
Question: Male, 2.5, UPD My son has had a decrease in appetite (eats breakfast and lunch but not dinner) but has been drinking regularly the past two days. His BMs are a lighter brown/tan/beige color, and he has had smelly gas. His stomach at night looks slightly distended but is gone by morning. The stomach...
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.
Over the years, as a special-needs parent navigating the Special Education system for Sophie, Jennifer became interested in learning as much as possible about that process. She began by attending PWSA (USA)’s first Wyatt Special Education Advocacy Training in March of 2013, and went on to complete a rigorous 9-month Special Education Advocacy Training course with the Council of Parent Advocates and Attorneys in May of 2015. This included successfully completing an advocacy internship with PWSA (USA). Jennifer is referred school cases by PWSA (USA)’s Family Support Counselors, and then works closely with parents and schools to review education records, assess the child’s situation at school, provide further information about how the syndrome affects the school experience, and, as needed, create improved IEPs and behavioral plans. Jennifer was excited to take on this role of helping parents in the PWS community to work collaboratively with school professionals and parents to create positive, effective learning environments for children with PWS across the country. Jennifer is a graduate of the WSEAT program.
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.
Past president of the Education Law Association and co-chair of the Pennsylvania special education appeals panel from 1990 to 2007, he is the author of the CEC monograph The Legal Meaning of Specific Learning Disability; the more recently published books, A Digest of Supreme Court Decisions Affecting Education and Student Teaching and the Law; and the two-volume reference Section 504, the ADA and theSchools, now in its fourth edition. In 2012, he received Research into Practice Award from the American Educational Research Association (AERA) and the Excellence in Research Award from AERA’s Division A (Administration, Organization & Leadership). In 2013, he received the University Council for Educational Administration’s Edwin Bridges award for significant contributions to the preparation and development of school leaders. In 2016, he received the Education Law Association’s Steven S. Goldberg Award for Distinguished Scholarship in Education Law, and in 2017 he received the Council for Exceptional Children’s Special Education Research Award. Note:Perry’s website is perryzirkel.com
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.
She obtained her PhD from Capella University in Education focusing her research on Prader-Willi Syndrome. Dr. McTighe is also a graduate of the William & Mary Law School’s Institute for Special Education Advocacy. Dr. McTighe is currently the chair of the Special Education Advisory Board for the Prader-Willi Syndrome Association-(USA). Amy is the Chair of PWSA (USA)’s Special Education Advisory Board.
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.
Staci Zimmerman has lived in Denver, CO for the past 17 years. She lives with her husband and 5 year old daughter. Staci attended The University of Kansas, with a B.A in sociology and an M.ed in Special Education, with an emphasis in Autism Spectrum Disorder. Staci enjoys teaching fitness classes, and keeping a healthy, active lifestyle in Colorado.
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.
Before founding SDLC, Jim was the Executive Director of Advocacy, Inc., the Texas Protection and Advocacy program from 1989-2001. During that period, he managed the growth of the program from 34 staff to a staff of 94 and from a centralized operation with one office to a regionalized operation with eleven offices spread across Texas.
From 1981-1989, Jim worked for the Advocacy Center for the Elderly and Disabled (Louisiana’s Protection and Advocacy program) as its Legal Director. From 1979 to 1981 Jim worked as a staff attorney for the Louisiana Center for the Public Interest.
Jim graduated from Tulane University School of Law in 1977, and has a BA in Accounting & Economics from the University of Puget Sound.
Jim is the author of publications and training materials on the IDEA, the ADA, and Section 504, including: Keeping Students with Disabilities in School: Legal Strategies and Effective Educational Practices for Preventing the Suspension of Students with Disabilities – A Resource Manual (2014); Stopping the Schoolhouse to Jailhouse Pipeline by Enforcing Federal Special Education Laws (2006), co–authored with Rhonda Brownstein from the Southern Poverty Law Center.
Jim has served as lead or co-counsel in several major IDEA actions in Texas, Louisiana, and Mississippi on behalf of thousands of students with disabilities, including Angel G. v. Texas Education Agency; Luke S. v. Louisiana Department of Education and Mattie T. v. Mississippi Department of Education. The past decade, he also filed and favorably settled five systemic administrative complaints in Louisiana, Mississippi, and Florida. These systemic complaints were filed under IDEA’s state complaint procedures.
Jim has also made over two hundred presentations at statewide, regional and national conferences on IDEA, Section 504, and ADA issues. The past four years he has also served as one of the faculty members at William and Mary Law School’s week long Institute on Special Education Advocacy.
