Archived Front Page Stories
Some of the links below may
not be active anymore.
Sprint 2010/Summer 2010
- East Meets The West is the title of the IPWSO 7th
International Conference held in Tapei, Taiwan.
- Extreme Makeover: Home Edition and Mystery Diagnosis
bring national awareness for Prader-Willi syndrome.
Click here
to read
more.
- PWSA's former Executive Director, Craig Polhemus, advises
us that he is now Vice President of StatPoint Technologies, Inc.
Craig served as Executive Director of Prader-Willi Syndrome
Association (USA) from June 2007 through April 2009 before his
resignation. [Click Here] for
more details.
Winter 2009/Spring 2010
- “Dance for Prader-Willi Syndrome” Utah Prader-Willi
Syndrome Association fundraising event on Friday, March 12th.
Compete for a $1,000 prize and keep checking back to see new
entry videos that are uploaded! Learn more about the event,
including how to participate, at
www.upwsa.org/dance.
- What Should be Done for People with PWS and the H1N1
Influenza (Swine Flu)?"
and a letter regarding PWSA (USA)'s recommendations
[Click here]
Fall 2009
- There is a new PWS Clinic at Nationwide Children's Hospital
in Columbus, Ohio. Running for almost a year, the clinic will
grow to twice monthly beginning in January.
Click here
to read more.
- Norma Rupe dies at 84 years old. An active,
vibrant staff member of PWSA (USA)
Click here for more information
- Halloween Tips and Tricks by Vicki Fesko
[Click here]
- Help PWSA (USA) win $25,000 from Chase Community Giving on
Facebook by December 11th and ask your friends to help, too.
Click here for more information.
- IPWSO is calling artists with Prader-Willi syndrome
from all over the world to submit their work for display in the
Virtual Art Gallery to be presented at the 7th International
Conference held in Tapei, Taiwan, on May 21-23, 2010. The
artwork can be a painting, drawing, sculpture or any other piece
made by a person with Prader-Willi syndrome.
Click here for a flyer.
- Good Morning America on ABC aired a segment about PWS
on Monday, August 17, 2009. To see it,
click here.
- The 20/20 segment about PWS scheduled for August 7, 2009 has
been rescheduled to a date not yet determined. More information
will be posted as it is known.
- Organizational changes - a page from our current
issue of the Gathered View [Click
here]
- Listen: Janalee’s interview with Cliff Roles from
Cliff on Sundays in Sarasota on 1280 AM by
clicking here.
- The National Organization to End the Waitlist (NOEWAIT) has
a petition directed to the President and Members of Congress.
PLEASE GO TO THE WEB SITE AND SIGN THE PETITION at
http://www.gopetition.com/petitions/noewait.html
- The Sibling Support Project is a national effort dedicated
to the life-long concerns of brothers and sisters of people who
have special health, developmental, or mental health concerns.
We encourage you to check out the site by
clicking here.
- Recently, Education Secretary Arne Duncan sent a letter to
Chief State School Officers encouraging each state to review
their current policies and guidelines regarding the use of
restraints and seclusion techniques in schools and if
appropriate develop or revise them to ensure the safety of
students. Read Secretary Duncan’s letter by
clicking here.
Summer 2009
- Read The Washington Post’s June 23, 2009 article
about the First International Hyperphagia Conference by
clicking here. Please note: Janalee Heinemann’s, PWSA (USA)
director of research and medical affairs, clarification of a
misquote. She said, “I did not say, ‘I do not think there is
going to be a pill.’ I said that ‘I do not think it will be so
simple to find the right pill as I once thought.’…It still is
good publicity.”
- Watch: Good Morning America, date to be determined,
which will feature a segment about PWS with Kate Kane, 28 with
PWS.
- The PWS, Angelman and Rett consortium of the NIH Rare Disease
Center grant will be refunded for another 5 years entirely
funded through the National Institute of Child Health and Human
Development (NICHD). Dr. Dan Driscoll, who is the chairperson
for the PWS section of the grant stated, “The families
deserve a large amount of credit for the continued success
of this national research effort”
- Sign-On in Support of the IDEA Fairness Restoration Act
(HR 2740)
click here
- The Consumer Guides to Getting and Keeping Health Insurance,
which are researched and published by Georgetown University’s
Health Policy Institute, are now available free online at
http://www.healthinsuranceinfo.net. We encourage you to use this resource.
- Find us on Facebook!
Click here
to join our Cause
and dedicate your page to raising PWS awareness.
- UPDATE- Funding is secured - Thank you for your help.
Our PWS researchers are at risk of losing funding for the
five year renewal for the NIH Rare Disease Consortium for
Angelman, Rett, and Prader-Willi Syndromes. Help us by sending a
letter via email or fax to Duane Alexander, director of the NICHD, no later than
June 7th by
clicking here as well
as your State Representatives. Find your State Representatives
by clicking
here. We make it easy – use our sample letter here.
- Looking for a Father’s Day Gift? Check out the Monkey Made of Sockies
for your golfer. Daphne’s Headcovers has teamed up with
LPGA touring professional Leta Lindley, and Shannon Grissom, the
creator of the Monkey Made of Sockies character in support of
the Prader-Willi Syndrome Association (USA). Find out more by
clicking here
Spring 2009
- It’s PWS Awareness Month. You can help increase awareness
about PWS by doing just one thing. Click here for ideas on what you can do to help.
-
Hyperphagia, Scientific and Care Providers Conferences are being
held in Baltimore, MD on June 4-5, 2009
[Click here] for more
details.
- In time for PWS Awareness Month of May, read Janalee
Heinemann’s article about PWS in Parenting Special Needs
Magazine.
Click here.
- On May 6, families in the state of Georgia will meet
with their governor who will present them with a signed
Proclamation recognizing May as PWS Awareness Month!
The governor will pose with the group for photos, too. Thanks
Georgia families for making this great awareness happen!
-
Daphne's Headcovers, the original headcover company, has
teamed up with LPGA touring professional Leta Lindley, and
Shannon Grissom, the creator of the Monkey Made of Sockies
character in support of the Prader-Willi Syndrome Association
(USA). Find out more, including how you can obtain this adorable
golf club headcover, by
clicking here.
-
Lisa Peters, mom to Nicholas with PWS and an outstanding
writer will have her story, "A Life Less Perfect" published in
an upcoming issue of "A Cup of Comfort.” Her story was selected
as a grand prize winner and will be the lead story in the
upcoming issue of “A Cup of Comfort for Parents of Children
with Special Needs.” The book will be released in May 2009.
Click
here to read her story.
-
Click here to check out the upcoming fundraisers supporting
PWSA (USA). Grassroots fundraising provides much needing
funding for PWSA (USA). During these times, we hope you will
attend an exciting event near you – or even think of doing your
own! Contact Jodi O’Sullivan at
josullivan@pwsausa.org
for more information.
-
In February, Crisis Intervention Counselor Evan Farrar
attended the Fifth Annual Traumatology Symposium sponsored by
Argosy University in Sarasota where he is also a student in the
Masters of Mental Health Counseling program.
- Two babies with PWS are seeking homes and are up for
adoption. Click here to read
more about them, their stories and how you can welcome them into
your life.
Winter 2008-09
- Phyllis Tetrino-Ferone has written a children’s poetry book.
“Children Lost and Children Found.” $.50 from each sale of the
book is to come to PWSA (USA)
-
Eastside High School Pep Rally raised $224,000
and donated to PWSA (USA) for crisis and family support
services.
Fall 2008
- International (IPWSO) president, Pam Eisen passed away
11/19/2008... [Click for more]
- 2009 Conferences...
[Click for more]
- A joint statement has been issued by PWSA (USA) and FPWR...
[click for more]
- Support H. Res. 1386 for National Prader-Willi Month and
More Research Funding... [click
for more]
- At the National Membership Meeting, Executive Director Craig
Polhemus, “It’s been an exciting year. For the first time in
history, families of those with PWS have access 24 hours a day,
7 days a week, to emergency medical counseling and referral . .
.. [click for more]
- PWSA (USA) Co-Chair Carol Hearn and Finance Committee Chair
Steve Leightman say, “PWSA (USA) urgently needs your help. Do
you share our vision of a world where everyone with PWS receives
an early diagnosis, terrific medical care, insurance benefits,
and a free and appropriate education . . . “
[click for more]
Items from home page prior to conversion - August 2008
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Prader-Willi Syndrome
Association (USA) Praises
Congress for Postponing
Vote on Bills Restricting
Access to Human Growth
Hormone
Click here
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Thanks from the Hurdle
Family
Click here
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Rare Donation Continues To
Give Five Years Later
Click here
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PWSA of Oregon - Christmas Party
2007 on YOU TUBE!
Click here |
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Time to plan for Summer Camp!
Click here
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National PWS awareness in the
NASCAR Craftsman Truck Series on
Friday, November 16, 2007...
Click here |
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Prader-Willi Syndrome
Association to participate in
CIBC World ...Click
here |
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Clint Hurdle from the
Colorado Rockies - National
Spokesperson -
Click here |
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To view the scientific
abstracts, biographies and
other documentation related
to the 6th IPWSO (our
international organization)
Conference that was hosted
in Romania, go to
Click Here |
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Other in the
News.. |
Conference...
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Photos from
2007 Dallas
Click
here |
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Photos from 2008 Milwaukee
will be available soon! |
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Scientific Abstracts are
available in members only |
Special Offers
New Medical & Research...
New
Publications..
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