Help us spread Prader-Willi Syndrome Awareness

Help us spread Prader-Willi Syndrome Awareness this month by sharing this video created by volunteer, Christina Smith, at PWSA (USA).

Work and Services of the Family Support Program

Did you know?

• When the family of someone newly diagnosed with Prader-Willi syndrome calls the national office we share information regarding our many services, connect them with an active E-mail group for Parents, send The Package of Hope, or any other age appropriate information, and connect them with their local chapter
• For our doctors and pediatricians, we send The Physician’s Packet which includes a DVD on PWS for professionals, The Growth Hormone book, The Medical Alerts booklet, and more. We include a personal letter to the doctor with an explanation of our services and the child’s name and birthdate.
• We work hand in hand with our local chapter’s to provide the best information for our families on a local and national level.
• We send our information all over the world and have PWS contacts in 98 countries through IPWSO (International Prader-Willi Syndrome Organization).
• We have trained parent mentors that give information and support to our families from ages 0 through 17.

Prader-Willi Syndrome (USA) Fundraiser

The Running of the Bears 5K

On Saturday, March 23^rd the first annual Running of the Bears 5K was held at Vestal High School in Vestal, New York to benefit the Prader-Willi Syndrome Association (USA).  The race was organized by students from the school’s Varsity Club.

The students chose to donate the proceeds from the race to Prader-Willi Syndrome Association (USA) after meeting Cami, the young granddaughter of a teacher from our school who was recently diagnosed with Prader-Willi syndrome.  Cami won all of our hearts with her winning smile and curious disposition.  Cami’s grandmother was able to teach us about Prader-Willi syndrome and the difficulties facing Cami as she grows up.

March weather in New York is unpredictable and race day turned out to be a bit chilly, windy and even a little snowy but the inaugural race still drew 299 participants including over 100 students.  Runners and walkers took off from the front of the high school, covered the 3.1 mile course and returned to a rocking party featuring student musicians, refreshments and prizes.  Many local businesses contributed to help cover the costs of the party as well as commemorative “Running of the Bears” race t-shirts.

On race day, we were joined by two more local children with Prader-Willi syndrome along with their families.  Cami, Ellie and Tommy rocked out to the band, danced with our students and hung out with the Bears’ mascots after the race.

The event was a great success in many ways.  We raised over $7,000 for the Prader-Willi Syndrome Association; we all had a really great time; and the students and staff who organized this race learned so much about the rewards of community service and how much you get back when you give.

We’re all looking forward to next year’s 2^nd annual Running of the Bears!

Sincerely,

Sue Darpino

Race Director

Videos from PWSA (USA) International Hyperphagia Conference

Several of the world renown researchers who gave presentations at our International Hyperphagia Conference have given permission for us to put their presentation on our the PWSA (USA) web site and Youtube channel.  See these lectures by clicking on the links below.

Dr. Jack Yanovski: Defining Hyperphagia http://youtu.be/chnBReFMEPo

Dr. Randy Seeley: PPARy in Central Control of Feeding http://youtu.be/ptc9DxBQLp0

Dr. Daniel Driscoll: Prader-Willi Syndrome http://youtu.be/KM_lBTDGztQ

Dr. Nicole Avena: Addictive Behavior and Hyperphagia http://youtu.be/iQVlA6aPkBg

Dr. Anthony Goldstone, Dr. Frank Greenway, Dr. Linda Gourash: Drugs vs. Behavior http://youtu.be/GZk5n7BGKGQ

Dr. Anthony Goldstone, Dr. Christina Vaisse, Dr. Ann Scheimann: Bariatric Surgery http://youtu.be/UhGkWB2ttL4

Dr. George Bray: Etiology and Pathophysiology of Obesity http://youtu.be/x_YVpo67I6o

 

Support Outside The United States

Mihaita Safta is one of our children with PWS from Bucharest, Romania. After seeing Janalee speak at the IPWSO Conference in Romania the family has contacted PWSA (USA) for help. We are happy to collaborate with our international organization, IPWSO, and help people from all countries get the assistance and support they need. It is a big world of PWS – getting more connected all the time thanks to the Internet

PWSA (USA) ~ Serving New Parents Every Day!

As most of you know, for over 12 years PWSA (USA) has provided free of charge to new parents of a child with Prader-Willi syndrome an extensive PACKAGE OF HOPE since 2001.  That packet includes such things as Nutritional Care For Infants and Toddlers booklet; Growth Hormone booklet; Therapeutic Interventions For The Child With PWS booklet; A Child With PWS – Birth to 3 booklet; Medical Alert booklets; Grandparent booklets; Positive, Hopeful Stories from Young Parents booklet; etc.  They also receive free membership and are offered a parent mentor through this program.

Because so many children are being diagnosed in the early infancy stages, we are concerned that often the new parents may get overwhelmed with information. So we have been working on a new project which is a publication called THE FIRST 100 DAYS, that is modeled after a publication created by Autism Speaks.  We have the permission of this organization to use their model, and I have seven wonderful medical professional couples who are parents of a child with PWS from ages infancy to three, working with me on different sections of the publication. We have exciting plans for putting this online, distributing across the nation to NICU’s, etc. There will even be a section called “What You Need To Know When Your Baby Is In the NICU”.  Of course, we will continue to distribute the important educational materials in our “Package of Hope” but may do more staging of the timing of distribution.

I want to thank everyone for your support of funding and services that makes such PWSA (USA) projects possible.  We are still “Hungry For A Cure” but fulfilled in knowing that every single day we make a difference in the lives of so many families, as exemplified an email I just received: “I want to thank you for all your support, advice, and help with Suzie….. I never imagined that things could ever turn out so well.  You were such a big help to us and I will always be grateful for that.” 

Janalee Heinemann, MSW

PWSA (USA) Director of Research & Medical Affairs

PWSA (USA) Crisis Counselor Evan Farrar,

PWSA (USA) Crisis Counselor Evan Farrar, recommends parents in the PWS community to explore Parent Centers in their area as a helpful resource for working with schools. Parent Centers, comprised of Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs), provide training and assistance to the families of the nation’s 7 million children with disabilities. These are funded through the U.S. Department of Education’s Office of Special Education Programs (OSEP) under the Individuals with Disabilities Education Act (IDEA). To learn more about Parent centers click here http://www.parentcenternetwork.org/parentcenters.html and to find a Parent Center near you visit http://www.parentcenternetwork.org/parentcenterlisting.html

Delayed Stomach Emptying in PWS

Re: Gastric Emptying Study Sponsored by PWSA (USA)

I have completed the final control for the patient’s gastric emptying portion of the PWS study.  Gastric emptying was delayed for nearly all the Prader-Willi subjects and was normal for all the obese matched control subjects.  We will be analyzing the PWS subjects to review the impact of the type of diet upon gastric emptying, the time/strength of gastric muscle contractions over the meal duration in addition to review of the GI peptides collected during the course of the meal.

As gastric emptying appears significantly delayed in nearly all patients with Prader-Willi syndrome, I would suggest for now controlling other factors, such as constipation, which are well documented to slow gastric emptying due to downstream effects.

Ann O. Scheimann, M.D., M.B.A.

Associate Professor of Pediatrics Division of Pediatric Gastroenterology and NutritionJohns Hopkins Hospital PWSA (USA) Clinical Advisory Board member

How am I going to get food? by Abbott Philson

How am I going to get food? by Abbott Philson

PWSA (USA) Advisory Board Member, Abbott Philson describes his experiences living with Prader-Willi syndrome and tells you what you can do to help. Share this on your page and help us spread awareness!

Why do people with PWS skin pick? FAMCar

Why do people with PWS skin pick? FAMCare project report by IPSWO

The behavior is thought to start in response to boredom, stress and anxiety or as a form of self-stimulation. It is also known that people with PWS have a high pain threshold and do not feel pain so intensely. Once commenced it is difficult for the person with PWS to cease the behavior without some form of external intervention, as they become “stuck” in the behavior.

If the underlying cause of the skin picking can be identified, especially where stress or anxiety is thought to be a contributing factor, the ideal would be to investigate and discuss what is causing the stress for the person with PWS. If the stress can be removed or decreased, the skin picking should also reduce. Remember, however, that the picking may continue as it may have built up to a repetitive behavior which will take longer to stop.