Phone: 800-926-4797 or 941-312-0400
Your membership provides this website - Join Today!


Norma Rupe

You can carry on her memory by making a tax deductible donation to PWSA (USA).

Please state it is in memory of Norma

On September 22, 2009, PWSA (USA) lost a long-time dedicated supporter and volunteer. Norma Rupe, who had been battling cancer, died in the early morning hours at the age of 84. Her grandsons, Jordan and Sammy, arrived in the nick of time due to plane delays and was able to hold her hand as she passed.

Norma volunteered for PWSA (USA) many, many years before taking a part-time position working on the study of deaths. She assumed the role of Bereavement Coordinator and spent countless hours calling and counseling parents who had lost their child with Prader-Willi syndrome.

Norma had two children, both who passed before she did. She lost her adult daughter because of a car accident and became the main support her grandchildren, Sammy and Jordan.  Earlier this year, her adult son died of a sudden heart attack. A few weeks later, Norma was diagnosed with her cancer.

Norma is survived by her husband, Bill, who was her life-long partner of 64 years, her grandsons and the many, many ‘family members’ and friends she knew through PWSA (USA). Her caring and loving personality touched all the people she met.

Thank you, Norma, for touching our lives so profoundly. We will all miss you dearly.

From her good friend...

“A good friend is someone who knows the song in your heart and can sing
it back to you …when you have forgotten the lines.”

Best regards,
Janalee Heinemann, MSW
Director of Research & Medical Affairs

Norma impressed all who met her.  Here is a comment from Giorgio, IPWSO.

Cara Janalee,

Please receive a long hug from all my family that had the opportunity to
spend a lovely evening with Norma while we were in Sarasota.
Her house with the colours of Christmas decorations and the sunset light
coming through the windows was as bright as her heart and face.
We will never forget her.

Un abbraccio



God’s Garden

God looked around his garden
and found an empty place,
He then looked down upon the earth
and saw your tired face.
He put his arms around you
and lifted you to rest.
God’s garden must be beautiful,
He always takes the best.
He knew that you were suffering,
He knew you were in pain.
He knew that you would never
get well on earth again.
He saw the road was getting rough
and the hills were hard to climb.
So He closed your weary eyelids
and whispered, “Peace be thine.”
It broke our hearts to lose you
but you didn’t go alone,
for part of us went with you
the day God called you home.

Author Unknown




Return to Home page

PWSA(USA) Disclaimer 


Privacy Policy

PWSA (USA) Link Policy


 Email Webmaster