Kramers’ mission against PWS in eighth year

Posted June 20, 2014 at 10:34 pm

by Steve Peterson

Anneke 4427.psd

Anneke Kramer

It’s now a June tradition in Hawarden, the Kramer Co-Ed Slow-Pitch Softball Tournament and Auction, will take place June 27 – 28 in Hawarden.

The effort is in its eighth year to raise awareness for Prader-Willi Syndrome (PWS), which affects Hawarden resident Anneke Kramer.

This year there will be a “Driving for a Cure” golf outing in its second year, at 1 p.m., June 27, with shotgun start at Hawarden Golf Course.

On June 28, the softball tournament and silent auction will be from 9:00 a.m. to 6:00 p.m. at Hawarden South Softball Complex, off First Street and Iowa Highway 12.

Proceeds from all events benefit the Prader-Willi Syndrome Association, both the state chapter in Des Moines and the national effort based in Gainesville, Fla.

The effort to date has raised about $70,000, said Stacy Kramer.

“People know their jobs and my sister-in-law and wife run it. Anneke has been doing real well, getting more and more active as a youth. She’s involved in youth softball, goes to her mother’s and brothers’ softball and baseball games and is very social and loves to make friends. She also has an interest in babies, her doll collection and has a vivid imagination,” said Ryan Kramer.

Last fall Anneke joined a PWS research study at the University of Kansas. She is on a strict 1,000-calorie count a day diet, and gets Human Growth Hormone shots six out of seven days.

Anneke will be a West Sioux second grader in Hawarden this fall.

“In six years we have raised more than $60,000. We’ll have a lot of vacation packages, airline tickets and Iowa Hawkeyes tickets. All the family get involved and they know their roles,” said Ryan Kramer.

“We have had tremendous support from the community over the years,” said Ryan.

According to earlier information given by Stacy Kramer:

“PWS is a lifelong condition with no cure. It is the No. 1 cause of genetic related obesity in the human race. PWS occurs in approximately 1:12,000 to 15,000 live births, equally in both sexes and all races.

The major characteristics of PWS are hypotonia (very low muscle tone); hypogonadism (lack of or incomplete sexual development); hyperphagia (uncontrollable hunger and/or insatiable appetite), cognitive impairment (learning disabilities), and difficult behaviors. Two major medical concerns are morbid obesity resulting for continual overeating or lack of a controlled diet and stomach perforation causing death which results from an eating binge because PWS sufferers’ brains don’t “Tell” the person when it is full).

Because the biggest medical concerns of PWS are related to food and an insatiable appetite, people with PWS have to follow strict dietary guidelines in order to maintain a healthy weight.

The importance of food monitoring with people who have PWS cannot be stressed enough.

“Most cases of PWS are attributed to a spontaneous error that occurs at or near the time of conception for unknown reasons. In a very small percentage of cases, two percent or less, a genetic mutation that does not affect the parent is passed on to the child and in these families more than one child may be affected. A PWS like disorder can also be acquired after birth if the hypothalamic portion of the brain is damaged through injury or surgery.”

Contact people for the effort to strike out PWS events are Stacy or Ryan Kramer at 712-552-3052. For more PWS information, visit www.pwsausa.org.

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