Archived Front Page Stories
Some of the links below may
not be active anymore.
- Its time to take one SMALL step for Prader-Willi Syndrome!
Join a walk near you or
host a walk in your own community! 100% of proceeds go to Prader-Willi Research
as described in the Prader-Willi Research Plan. One SMALL step is jointly
supported by PWSA-USA and the Foundation for Prader-Willi Research (FPWR).
- Our blog, PWSATODAY has a new post.
||Please Help Us Win $250,000! Our
Utah PWSA chapter is in the running to win up to
$250,000 in the Vivint contest on Facebook and we need
you to VOTE EVERY DAY thru August 27! Utah will use the
money for projects that will help everyone with PWS.
Voting is easy and costs nothing – for instructions and
Click here for more information.
- Call for Nominations...Click
- Would you like to participate in an On
the Move event that you can do from any
location? Check out PWSA of Minnesota's
www.mnmove.pwsausaevents.org. You can choose
to have 100% of the funds you raise go to PWSA
PWSA (USA) and FPWR are jointly supporting
One SMALL Step Walkathon to raise money for
Syndrome Research. All proceeds will fund
the jointly developed PWS
Research Plan. We already have 20 locations
and with your help we can reach our goal of over
50 locations in 2011. Everyone who signs up to
hosts a walk, by February 28th is entered into a
draw to win an Apple iPad. Register online at
Have you ever wished you could go to a
conference, but don't have the money or resources to go? Well
here is a series of DVDs that captures the speakers at the
International Conference in Taipei, Taiwan that took
place May 20-23, 2010. To learn more about this offer click here.
- Evan Farrar, Executive Director, sends a
message to families about Risk of Stomach Necrosis and
to read the letter.
How the latest
computing technology influences the lives of patients
with Prader-Willi Syndrome (youtube)
awards $117 million for Rare Diseases Clinical Research
Network including Prader-Willi syndrome research...
Regional Focus and Support Groups in your area.
here] to learn more.
Notes from Japan in the Aftermath of Tragedy
Our contacts with our Prader-Willi syndrome members in Japan
after the earthquake, tsunami and nuclear meltdown concerns. We
have to admire their resilience and strong sense of community in
helping others. It is a tragedy beyond our imagination. We pray
for our PWS families – and all people living in Japan.
- Did you know that in the past six years PWSA (USA) has committed over 1.2
Million Dollars to fund research? In fact, almost
every major breakthrough in PWS has been made by our PWSA (USA)
scientists! And each year, YOU have an opportunity to
help advance this effort by
participating in the Valentine
New Clue for Understanding the Hunger of
Prader-Willi Syndrome: Research Volunteers are Needed for
Further Studies. Click
here for more details.
The collaboration of the Prader-Willi Syndrome Association (
USA), Angelman Syndrome Foundation, Inc., and the International
Rett Syndrome Foundation presents “Parental Stress When Your
Child Has a Developmental Disorder: Helpful Tips and Coping
Strategies” and is presented by M. Paige Powell, PhD. Dr.
Paige is the Coordinator, Psychology Program for Developmental
Disorders Psychology Service, Texas Children’s Hospital
Assistant Professor, Department of Pediatrics, Baylor College of
to view this presentation. We want to thank the
Gerald J. and Dorothy R. Friedman, New York Foundation for grant
funding to PWSA (USA) that helped make this project possible.
Rare Diseases Clinical Research Network (RDCRN) and other
research projects need you!
here and participate!
PWSA (USA) participates in the
Federal Campaign, and you can help! Click
here for more details.
PWSA (USA)’s National Spokesperson, named Manager of the
Pittsburgh Pirates. To learn more…[click
Association (USA) has an Adult Advisory Board made up
persons with PWS. They met October 28-29, 2010 on Lido Key
. . . read more
PWSA (USA Announces
Evan Farrar as
the permanent Executive Director of the organization.
click here for more
APX doles out $130K to local charities
It’s not too late. You can still be a 2010 Angel!
Send your gift
today! From all of us here at PWSA (USA) – wishing you a
wonderful holiday season and the very best in 2011!
- "My Deadly Appetite" will
be running on
TLC on Dec.1 at 8:00PM. This is a great time slot
for the show, and should significantly increase the number of
people who will view it. Discovery Health Channel produced this
one hour special on Prader-Willi syndrome. The story has a very
positive ending with William Weaver losing 86 pounds at The
Children's Institute and since returning home. His behavior has
also significantly improved as has his self esteem. His father
said, "He is an absolutely different child." William is now
getting involved with a lot of activities and was able to buy
store bought blue jeans for the first time. Through the second
half of the show, you get to see how sweet and loving children
and adults who have PWS can be. Go to
Discovery Health Channel to get the details.
Click here to read a
mother's response to the show.
- The Annual Membership Meeting for 2010
will be held telephonically on Wednesday, September 1, 2010,
at 8:00 p.m., Eastern Standard Time. To join the call, please
dial 1-219-509-8222. The Participant Access Code is 692767.
- Prader-Willi Syndrome Association (USA)
and the Foundation for Prader-Willi Research joint board
meeting scheduled click
here for details.
View a PWS special on North Carolina’s
NC Now TV, part of UNC-TV, released in August 2010.
- International Prader-Willi Syndrome
Organisation (IPWSO) 7th Scientific Conference Program
Booklet including abstracts. MAY 20-21, 2010, TAIPEI,
TAIWAN - PDF
- Attention all federal employees! Combined Federal Campaign
(CFC) included the Prader-Willi Syndrome Association (USA)!
Click here for details.
- View the entire episode of Extreme Makeover: Home Edition
PWSA ORGANIZATIONS WIN – BECAUSE OF YOUR
VOTES!! Click here for
details. Kristen Hernandez from Colorado won our give
away! Click here
for more details.
Spring 2010/Summer 2010
- US Senate Resolution Passes Supporting Designation for
National Prader-Willi Syndrome Awareness Month (May 27, 2010).
- The National Dissemination Center for Children with
Disabilities is an important special education resource for
parents and teachers. To learn more about their online
publications and resources visit
- ABC’s Extreme Makeover: Home Edition
is scheduled to re-air the episode with the Starkweather family
on July 25, 2010. Ethan, 9, has PWS. Check your local
listings to confirm date & time, which is subject to change
- The Department of Health and Human Services
has created a website to assist consumers with understanding the
Affordable Care Act including information specifically
for people with disabilities. To learn more visit:
- 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.
- 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
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
- What Should be Done for People with PWS and the H1N1
Influenza (Swine Flu)?"
and a letter regarding PWSA (USA)'s recommendations
- 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.
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
- 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,
- 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
- Listen: Janalee’s interview with Cliff Roles from
Cliff on Sundays in Sarasota on 1280 AM by
- 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
- 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
- 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
- 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
- Watch: Good Morning America, date to be determined,
which will feature a segment about PWS with Kate Kane, 28 with
- 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
- 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!
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
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
- 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
- In time for PWS Awareness Month of May, read Janalee
Heinemann’s article about PWS in Parenting Special Needs
- 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
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.
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
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
- 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
- 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
- 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
Association (USA) Praises
Congress for Postponing
Vote on Bills Restricting
Access to Human Growth
||Thanks from the Hurdle
||Rare Donation Continues To
Give Five Years Later
||PWSA of Oregon - Christmas Party
2007 on YOU TUBE!
||Time to plan for Summer Camp!
||National PWS awareness in the
NASCAR Craftsman Truck Series on
Friday, November 16, 2007...
Association to participate in
CIBC World ...Click
||Clint Hurdle from the
Colorado Rockies - National
||To view the scientific
abstracts, biographies and
other documentation related
to the 6th IPWSO (our
Conference that was hosted
in Romania, go to
New Medical & Research...
||Photos from 2008 Milwaukee
will be available soon!
||Scientific Abstracts are
available in members only