In this ongoing blog, we will share with you what’s happening at PWSA (USA) today including ideas for spreading awareness, important information on resources and strategies for supporting people living with Prader-Willi syndrome (PWS), encouragement for families raising a child with PWS, updates on advocacy issues, work we are doing in partnership with others, and more. So I hope you will be a regular reader of this blog.
Appropriately, though, this first blog post will address the importance of spreading PWS awareness. Right now, we are in the exciting midst of our first PWSA (USA) sponsored national campaign to generate PWS awareness called Prader-Willi Syndrome On The Move. The very popular PWS On The Move character shown below is fast becoming the symbol of PWS Awareness month.
We hope this symbolism will grow in the years ahead as, with your help, we continue to develop and strengthen what we hope will be a signature PWS awareness campaign. This year, because it is our first campaign, we are recognizing awareness events beyond the month of May so if you would like to participate please contact Ben Karp (800-926-4730 or firstname.lastname@example.org) to find out how you, your friends, and family can create an awareness event for your community.
The new Prader-Willi Syndrome On The Move Campaign is really designed to capture the imagination of people beyond the PWS community. We hope to do this in two ways. First, by helping people to imagine what living with PWS is like as much as possible through awareness events that bring people together to meet people living with PWS, their families, and to hear their stories. We want to challenge people to imagine:
- What it would be like to be hungry all the time.
- What it is like to gain weight on fewer calories than typically developing people.
- What it is like to live with low muscle tone, a higher threshold of pain, and cognitive challenges.
- What it is like to struggle more than others with transition and change.
- What is like to live in a world where too often people respond to Prader-Wllli syndrome with little or no understanding of what it means.
If we can get people to imagine even a little what it means to live with PWS, then we believe we can inspire people to take the next critical step of imagining what the world and individual communities would look like if people with PWS were truly welcomed and affirmed. For us, this world would include:
- Food security at home, school and other important life settings.
- Educational resources – to support learning – such as paraprofessional assistance at school.
- Support services – across the board –to maximize independence, encourage socialization, promote employment, and more.
- Insurance companies and health care systems that address the complex needs of PWS without wait listing and denial of essential services.
- Continued innovative research into the causes of PWS and effective treatments.
- Communities that welcome people with PWS for social and other community activities so families raising a child with PWS are not living in isolation.
- Legislators and policy makers with an understanding of PWS and the needs of people who live with this complex syndrome.
Our fervent hope is that the more people imagine what it means to live with PWS the more people – beyond the PWS community – will feel inspired to join our effort to create the kind of society and communities where people with PWS, and their families, can thrive and flourish.
So this is why we are calling for the PWS community to keep on the move together to stir the imagination of our neighbors, our friends, our co-workers, our community members, our political and governmental leaders, and ourselves to imagine the possibilities of the world we can create for people living with PWS by being On The Move together.
If you have joined the campaign already, we thank you. If you are thinking about it, we invite you to join us today or in the future.
And whatever you are doing to spread PWS awareness in your own sphere of influence, keep it up! Together, we are making a difference in the lives of people and families living with PWS.
Evan Farrar, Executive Director, PWSA (USA)
P.S. Become a Fan of the PWSA (USA) FaceBook page. Go to http://www.facebook.com/pages/Prader-Willi-Syndrome-Association-USA/145662662172371