One SMALL Step

by Susan Hedstrom, mom to Jayden (PWS)

Spring Green

 


Around here, there are two types of people—spring folks and fall folks.  As an extension of our obsession with the weather, we take our seasons pretty seriously. The two groups can argue non-stop about which of these two times of year reigns supreme.  I, a die-hard spring fan, wait impatiently all winter for the torture to be over and for the festivities to begin. 

A new drug to build muscle?

Individuals with PWS have motor difficulties throughout life, with low muscle tone and decreased muscle mass.

Comments

Obesity solution

Submitted by fat1427 on Mon, 2010-08-16 01:44.

Use a calorie calculator to figure out how many calories you burn while sitting, standing, exercising, lifting weights, etc. throughout the day. It helps to keep a daily activity journal or you could even wear a heart rate monitor that calculates calories burned.

Healthy way to lose weight

 

 

New Resource for Understanding Autism

Individuals with PWS struggle with a variety of behavioral issues and have an increased incidence of autism compared to the general population and to most other developmental disabilities.  Even in those with PWS who don't have a diagnosis of autism, many behavioral similarities can be found.

Go the Extra Mile for PWS!!

We are the Maczkos: John, Catt (me), Julia (16), Jack (13) and Thomas Jersey (just turned five and has PWS by UPD).

Thomas is one of those kids who spent the first two months of life in NICUs. I know many of you are familiar with how that throws you – your perspective, your family, your schedule, your life -out of whack. Leaving the hospital without your baby… it’s just not right! Add that to the diagnosis of PWS & you’ve got a recipe for disaster if you’re not connected and know to guard your heart.

Times article on Fragile X clinical trial

There’s a very nice article in the New York Times today [Promise Seen in Drug for Retardation Syndrome] about a human clinical trial testing a drug to improve behavior in those with Fragile X syndrome (FXS), a genetic disorder associated with intellectual disability and behavior problems, among other issues.  The article traces the long path that led to the development of drugs for FXS.   The results of the clinical trial are not yet published and larger studies will

A Preliminary Analysis of the Phenomenology of Skin-Picking in Youth with PWS

Below is a special guest blog from Jessica Morgan, a graduate student working with Dr. Eric Storch at the University of South Florida.  Their group has an interest in understanding skin picking (and other obsessive/compulsive behaviors) in PWS so that they can help develop more effective ways to decrease the behavior.  Many thanks to Jessica for summarizing their study:

Dante Johnson

"Happy 30th Birthday to you, Keegan Johnson, and, by the way, your son has Prader-Willi syndrome!"  Although the news wasn’t delivered in song, that was what was presented to Keegan and Tanya Johnson on the day they planned to celebrate Keegan’s first 30 years of life.  A jolt like that requires more than a cake with 30 candles to get over. 

Emma Roth

In the summer of 1999, Mark Roth and Lauren Schwartz-Roth of Seattle, WA were expecting their first child with great anticipation.  However, during the pregnancy, Lauren noticed decreased fetal movement, and when the doctor confirmed that the baby was too small, it became apparent that something was wrong.  "We were terrified," said Lauren.  Lauren was admitted to the hospital, and after many long weeks of monitoring, their daughter, Emma, was born 6 weeks early via C-section.  "The doctors were puzzled by Emma,"  Mark and Lauren recall.