Home » PWS Awareness Month – 15 Ways to Raise Awareness
15 Ways to Raise Awareness for PWS
Light up your home with PWSA | USA’s colors – purple, pink, blue and green! Please send us pictures of your colorful display to communications@pwsausa.org so that we can share it and encourage others to do the same.
Go to our Advocacy & Awareness webpage to find your elected officials and ask them to support/co-sponsor important legislation that will help everyone affected by rare disease!
Reach out and offer to speak about PWS at your local library, civic group (Rotary/Kiwanis/Lion’s Club), school, university, or community organization.
Share your story with the PWS community AND the general public! Pull out your phone/computer/video camera and have a friend or family member ask you one or more of the following questions to share your story! OR, call PWSA | USA and we will interview you via Zoom. Post your recording to our “Share Your Story” page or email your file to communications@pwsausa.org.
Introduction; tell your PWS story
What has your child achieved that you were told would not possible?
If you could describe the most challenging moment you’ve had since first learning about PWS, what would that be?
What are you most proud of as a PWS parent?
What do you know now about PWS that you wish you knew 3, 5, 10 years ago?
What do you wish other people understood about PWS?
How has your child’s diagnosis changed you/your life?
What is something that your child has overcome?
What has been the most difficult part of your journey?
What have you learned about yourself along the way?
Describe the most amazing experience you’ve encountered, which would not have happened without PWS being in your life?
Share with one-click, factual information produced for PWS Awareness Month by PWSA | USA. Click here to download our PWS Facts Toolkit.
We are rallying behind a critical petition urging the FDA to take action on DCCR (diazoxide choline) for individuals living with PWS. Why is this so urgent? Because PWS patients, families, and clinicians are facing a staggering lack of treatment options. Without FDA-approved therapies, individuals with PWS struggle with everyday tasks and face life-threatening risks. But DCCR could change that. Sign the petition by May 23rd and spread the word to make a difference today! Click here to sign on NOW.
Visit your local NICU and provide them with information on PWS and PWSA | USA. Offer to leave your information so that they can distribute it to the next family who receives a PWS diagnosis while in the NICU. Find our downloadable Medical A-Z resources and updated Medical Alerts Booklet by clicking here.
Become a family mentor for PWSA | USA! Help other families who have received a diagnosis navigate the world of PWS. For more information on how to join, contact volunteer@pwsausa.org.
To celebrate PWS Awareness Month, PWSA | USA has added new merchandise to our online store! Show your PWS Pride during the month of May, and all year long, with our Hope defined, PWS is RARE but HOPE is NOT, and Ask Me… About PWS items, including shirts, sweatshirts, water bottles, coffee mugs, hats, onesies, and so much more.
Write an editorial letter and share it with your local newspaper!
Take this month as an opportunity to reach out to the doctors, therapists, and caregivers who offer you and your family support. A simple email or phone call will go a long way!
Become a PWSA | USA volunteer! Volunteers are the cornerstone and lifeblood of PWSA | USA. These individuals are instrumental in delivering services, advancing and promoting public policy, raising awareness, and providing support and resources the PWS community has come to rely on. If you are interested, please fill out our Volunteer Form or contact us at volunteer@pwsausa.org.
Pick a day in May and ask your local employer, your child’s school, church fellowship, etc. to spread awareness by hosting a dress-down day for $1, $5, $10 to “Wear Jeans for Rare Genes.” Go to Wear Jeans for Rare Genes and download everything you need to get started! You can also contact us at development@pwsausa.org with any questions.
Invite PWS grandparents and siblings to join our private PWSA Facebook pages so that they can stay informed and feel supported:
Host a PWS Hope United fundraiser! Whether it’s a birthday fundraiser on Facebook or a large event with family and friends, there’s something for everyone to get involved. Click here to find more information and contact hopeunited@pwsausa.org to get started!
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PWSA | USA
1032 E Brandon BLVD #4744
Sarasota, FL 33511
Phone: (941) 312-0400
Jennifer Bolander
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
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, ADigest of Supreme CourtDecisions AffectingEducation 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 Farrar
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.
In addition to Evan’s work with parents, he helped create PWSA (USA)’s Wyatt Special Education Advocacy Training (WSEAT) in 2013, the PWSA (USA) Special Education Advisory Board (SEAB) and created PWSA (USA)’s e-letter “School Times”. Evan’s special education advocacy training includes graduating from the William and Mary College of Law’s Special Education Advocacy Institute and regularly attending the annual Special Education Law Symposium at Lehigh University. Evan has an M.A. in Mental Health Counseling.
Dr. Amy McTighe
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
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.
Jim Comstock-Galagan Esq.
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.
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.