Share Your "PWS in Adulthood" Story

We want to share your experiences caring for your adult loved one with PWS. Sharing your adult loved one’s story helps spread awareness of PWS to our community and beyond, and to the younger families who may benefit from having ideas of what adulthood in PWS can look like. It is also a way to celebrate the successes of your loved one and provide examples to other families on how to approach living as an adult. We want to know what the transition into adulthood looked like, how their living situation is managed, what supports they have in place, if they have successful romantic or platonic relationships, what it looks like to work or volunteer in the community, and anything else you’re willing to share about your adult loved one.

Adults with PWS are invited to share their own story! We would love to amplify more voices of individuals living with PWS, so please share this opportunity with your loved one. They can offer a unique, authentic, and well-informed perspective to our community.

Whether you are a caregiver, parent, or individual with PWS, we hope that you share your adulthood story with our community to spread knowledge and awareness of PWS in adulthood and celebrate the lives of those adults living with Prader-Willi syndrome.

Share your story by filling out the form below.

Please note that not all questions are required. We invite you to share what you are inspired to share.

Email*
Name of person submitting*
Relationship to individual with PWS*
Name and Age of Loved one with PWS*
State where individual with PWS lives*
What steps did you take to prepare for their life as an adult?
What does independence look like for them?
What supports do they have in place?
Do they have romantic relationships? If so, how are those managed?
Do they work/volunteer in the community? If so, what does that look like?
Do you have advice for parents on how and when to prepare for adulthood?
Is there anything else you would like to share about your loved one with PWS?
File
File
File
I agree to PWSA | USA's Media Consent Policy*
I agree to the privacy policy.
By clicking here, I hereby authorize and grant my full permission to Prader-Willi Syndrome Association | USA (PWSA | USA) to collect, use and store any of my personal information, including, without limitation, my likeness, image, voice, and/or statements (“the personal information”) for posting on the PWSA | USA website or social media pages, to use for printed publications or for other purposes that may convey my identity (names may be used unless otherwise specified), diagnosis and other information.

I acknowledge that:

1. I have the authority to grant this authorization and I hereby waive any rights of privacy and other cognizable claims which I may have in connection with the use of the personal information on the PWSA | USA website or social media pages, in printed or other publications, or for other purposes. I understand that this consent is intended to release from liability all personnel of PWSA | USA and is valid unless and until revoked as described below.
2. I understand that the personal information provided to PWSA | USA may reveal sensitive health information about me, including health conditions, diagnosis, and treatment.
3. I understand that any personal information I share with PWSA | USA may be included in various media, including, without limitation, print and digital media, audio and video recordings, photographs, and written statements.
4. I agree that PWSA | USA shall own worldwide copyright and other intellectual property rights in any work product incorporating the personal information. Under this authorization, I assign and transfer to PWSA | USA full worldwide right, title, interest in and ownership of all copyright and other intellectual property rights in such work product without payment of any fees, royalties or other compensation.
5. I understand that I may revoke this authorization at any time by sending an email to PWSA | USA at events@pwsausa.org which identifies the information covered by the revocation. Upon receipt of this notice, PWSA | USA will endeavor to stop using this information within a reasonable time after receipt of such notice.
6. I acknowledge that I am signing this authorization voluntarily and that I am not required to sign this authorization as a condition of eligibility to receive any benefits or services from PWSA | USA. I understand that I may refuse to sign this form.
7. If I have any questions about my privacy rights under this authorization, I understand I may contact PWSA | USA by sending an email to: events@pwsausa.org . The terms of this authorization are not linked to any other agreement, nor to the term of any other agreement, and the terms of this authorization will survive until a request for revocation is submitted as described above.