February 2013
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On The Move in 2013!
Prader-Willi Syndrome On The Move We're currently in the planning and implementation stages of our annual On The Move Campaign! State chapters, friends and families from all across the United States are taking initiative and starting their very own OTM events, and we could always use more fundraisers. To learn more about how you can fund raise for PWSA (USA), please email Ben Karp at bkarp@pwsausa.org .

Check out PWSA (USA)'s new Youtube channel!

  

 

 

PWSA (USA) Advisory Board Member, Abbott Philson tells what Prader-Willi syndrome is and describes his experiences living with this challenging syndrome. Click here to watch the video

 

 

 

 

 

 

 

PWS is about Anxiety

People with PWS typically feel high levels of anxiety- all the time.  Maladaptive, unwanted behavoirs are often attempts to reduce the level of anxiety the individual with PWS is feeling: skin picking (also done when feeling bored); repeated questions; excessive talking; controlling, oppositional or argumentative behavior; sleeping.

 

If you can reduce or eliminate the cause of anxiety, you'll reduce or eliminate the behavior problem!  The best start is to remember they have a processing delay and they want to please you. - Kate Beaver, Crisis Counselor See more gathered view articles

 

 

Recent Changes

 We regret to inform you that after 27 years of dedicated service to Prader-Willi syndrome, Ken Smith's position at The Children's Institute has been eliminated. Ken remains a much valued asset to our association and he is committed to working with PWSA(USA) and our families.  If you want to contact Ken, you can do so by emailing him at ksmith@pwsausa.org.

 

 

Our Condolences

 Recently I received word that Doris Jane (known fondly as DJ) Miller, passed away suddenly at the age of 87 yrs.  DJ was the ultimate mother and caregiver, first of her four daughters, one of which is Margaret Miller who has PWS and later in life, of her husband, Bobby who passed away six years ago.  I first met DJ and Bobby in Minneapolis at the first national PWS convention in 1979.  My daughter was 4 yrs. Old and Margaret was about 14 years old, two of the first 15 children with PWS in attendance.  I discovered DJ and Bobby lived in Doylestown, PA, a mere 2 hours. from my home in Lancaster, PA.  I was overjoyed and thrilled to meet her and her family and to discover that I could contact someone close to home.  We became close friends and began a lifelong friendship and collaberation to help and improve the lives of our PWS children.  Together we established a five state organization, called the Mid-Atlantic PWS chapter.  For over ten years we lobbied legislators, community leaders, mental and physical health organizations and the general public to establish the first all PWS group home in PA. In August 1989, this group home opened in Lancaster County for six adults with PWS.  Without Doris Jane's influence, input and personal experiences, this would never have happened.  Today, this home and another one continue to serve 7 adults with PWS, giving them a safe environment to live their lives to their fullest potential. DJ served on the national PWSA (USA) Board of  Directors for many years.  She was a familiar face at all of the conventions over the last 20 years.   In 1992, she hosted and prepared the national meeting in Philadelphia. DJ was a tireless worker for her family, PWSA as well as her local community where she served on the Board of Directors of Doylestown Hospital and the Village Improvement Association.  PWSA has lost a valuable and dedicated member.  I will miss her forever and her tireless energy.  She will join other angels who have gone before her and worked hard to alert everyone about PWSA.

 

           Isa Breneisen, Lancaster County, PA     

 

To make a donation in Memory of DJ Miller Click here

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Prader-Willi Syndrome Association (USA)
8588 Potter Park Drive Suite 500
Sarasota, FL 34238
(800) 926-4797