Light up your home with PWSA | USA's colors - purple, pink, blue and green! Please send us pictures of your colorful display to firstname.lastname@example.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 email@example.com.
- 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?