With the end of Prader-Willi Syndrome Awareness Month in May it is a good time to remember that promoting Prader-Willi syndrome awareness– like supporting people living with PWS and their families -is important every single day of the year. So, even as our first May Prader-Willi Syndrome On The Move campaign “officially” winds down we urge you to contact us if you would like to plan an awareness event in your community in the months ahead. We would be happy to help you think through the possibilities. Large, or small, these events make an enormous difference in the lives of people living with PWS.
One of the ways we know this is the dramatic change in the past decade of age of diagnosis for a child with PWS. In the past, it was very common to have a diagnosis at 10 years of age or later. Now, thanks to the hard work of spreading awareness by the PWS community, children born with PWS are much more likely to be diagnosed at an earlier age. For example, during the month of May PWSA (USA) received 12 calls from parents whose children were recently diagnosed with PWS all under the age of 5. Why is this important? Because an early diagnosis means implementation of critically important early interventions such as good nutritional and food security practices as needed, physical and other important therapies and treatments, crucial early support for parents of a child with PWS so they have accurate and helpful information, and perhaps most importantly connecting families with other families raising a child with PWS so a parent with a newly diagnosed child does not feel so alone. All of these elements of an early diagnosis help to improve long term outcomes not just for children born with PWS but their families as well.
At PWSA (USA) serving, supporting, and strengthening families is a key part of our mission. In fact, a commitment to families is part of the ”DNA” of PWSA (USA) because we were started over 30 years ago by a few families who gathered together to create the support they could not find anywhere else. Because of their commitment and vision, PWSA (USA) exists today to serve a new generation of people and families living with PWS. And a key component of serving the PWS community is offering a National Conference where families and professionals can come together to support each other and learn about new research, resources, and information to help improve the quality of life of all people with PWS regardless of age. In 2011, our National Conference will be held in Orlando, FL from November 11-13 and you are invited to attend. Registration will begin soon!
This national gathering is an important but challenging project for a small agency like PWSA (USA) to manage and fund. One of the ways we can make conference affordable is by recruiting Conference Sponsors. So, if you or someone you know (or a business) are interested in supporting this event, please go to http://www.pwsausa.org/conference/2011/exhibitors-sponsors.htm to learn how. As one sponsor described the PWSA (USA) National Conference, “…this is such a great cause as it drives so much awareness and education for so many.”
With the launching of several new channels for generating increased PWS awareness in May, and a national conference coming in November, these are exciting times for the PWS community! We hope you will keep coming back to read our blog – and invite others to join you – as we continue promoting PWS awareness throughout the year.
Evan Farrar, PWSA (USA) Executive Director