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Grandparent Support

grandmother image

My name is Michele Leightman and when I think about my grandchildren, I smile from ear to ear.  One of my precious granddaughters, Josiln (Josie) was born in June, 2002.  When Josi was diagnosed a month after her birth with Prader-Willi syndrome, my world, and the world of the people I love, shook.  There were so many questions, so many emotions.  I began talking to the wonderful staff and volunteers involved with the national office of the Prader-Willi Syndrome Association and there I found badly needed support and information.  After time passed, I realized that I was not the only grandparent in need of sharing my thoughts and feelings with others who were walking in shoes similar to mine. I am now a volunteer myself, coordinating a Grandparent Support/Mentor Program specifically designed for people with grandchildren between the ages of birth and toddler years who have been newly diagnosed with PWS.  The Association has much to offer. We look forward to having all of you join us in our united effort to give strength and hope to our children, grandchildren, and each other.

For information about the Grandparent Mentor/Support Program and other programs, activities, literature, and support services, and ways in which you, too, can become involved, please contact our National office:

Prader-Willi Syndrome Association (USA)
8588 Potter Park Drive, Suite 500
Sarasota, Florida  34238 
Toll Free:  1-800 926-4797
Website:   www.pwsausa.org


My Name is Maureen O’Neil and I am the grandmother of 5 grandchildren.  My twin granddaughters are identical twins so they both have PWS.  They will be 8 years old in November.  We spend many week-ends giving help and support with the girls and their 9 year old brother.   We attend and support the girls when they participate in extra activities in school or a special sports program.  I have gone to the past two National Conventions and some local ones as well.  I am trying to gain incite into what their futures could hold for them and how we could help then achieve the highest level.  I have listened and learned about this syndrome at meetings as well as donating my time helping in any way possible. 

I am now getting involved in the grandparent’s web site.  I think this will help any grandparent who has questions or just need support.  I have attended the Grandparent’s Sharing Sessions at the last two annual conferences where I met other grandparents.   

I feel by getting involved I will learn about PWS and how I can help my granddaughters.  I do know that the love they give makes all the work worthwhile. 

Please see the Home Page for more information about the upcoming Conference.

Last updated: 02/09/2012

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