Additional Details from Soleno Therapeutics:
Dear Members of the PWS Community,
We are so grateful for your response to our recent letter requesting photos for an upcoming opportunity to raise awareness and understanding for the PWS community in Times Square on PWS Awareness Day. The number of beautiful photos and notes we’ve received has been so moving, and we appreciate your trust and partnership so much!
There’s still time if you would like to submit high-resolution photos of yourself or a loved one with PWS. Please submit your photos to Stories@Soleno.Life no later than 2pm PT / 5pm ET on Thursday, April 18, for consideration for use in the Times Square billboard video. You are welcome to continue to send photos after the deadline for potential use on the accompanying PWS Awareness Month website and social media campaign.
Thank you again!
Sincerely,
Kristen Yen
Senior VP, Clinical Operations
Soleno Therapeutics, Inc.
Please download and complete Soleno Therapeutics' Photo Release Form to submit along with your photo.
Original Invitation Letter from Soleno Therapeutics:
Dear Members of the PWS Community,
I hope this letter finds you well. As we approach Prader-Willi Syndrome Awareness Month in May, I am writing to share an exciting opportunity for collaboration with you.
At Soleno Therapeutics, we are dedicated to supporting individuals and families affected by Prader-Willi syndrome (PWS). In recognition of this important month, we have secured a prominent digital billboard space in New York Times Square. This platform presents us with a unique opportunity to celebrate the lives and stories of individuals with PWS, and we would like to extend an invitation for the PWS community to be a part of this initiative.
We are currently seeking high-resolution photos of individuals with Prader-Willi syndrome, which will be featured on the digital billboard. Photos should be emailed to stories@soleno.life. To respect privacy, these photos will be accompanied by first names only. Our aim is to showcase the diversity and strength within the PWS community, spreading awareness and fostering understanding. Please complete the Photo Release form (found at the buttons above) and submit this along with your photos. Depending on the response and the number of photos received, we may not be able to use them all in this digital billboard, but look forward to the opportunity to use these images in future initiatives to continue supporting the PWS community.
Additionally, the message on the digital billboard will encourage people to share their story and words of kindness with the Prader-Willi syndrome community on a website currently under development. These stories will be compiled into a video showcasing these stories of hope and shared on a simple website, reaching a wider audience and amplifying the impact of our message. By sharing these stories, we hope to inspire others and highlight the resilience and positivity that characterize the PWS community.
We understand the importance of sensitivity and respect in sharing personal stories, and we are committed to upholding these values throughout this initiative. If you or someone you know would like to participate or if you have any questions about the project, please don’t hesitate to reach out to us.
Your support in this endeavor would be invaluable, and we look forward to the possibility of collaborating with you.
Thank you for your consideration.
Sincerely,
Kristen Yen
Senior VP, Clinical Operations
Soleno Therapeutics, Inc.
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.