Prader-Willi California Foundation’s State Conference Oct. 27 to Focus on Education

Prader-Willi California Foundation’s State Conference Oct. 27 to Focus on Education

This year’s Prader-Willi California Foundation (PWCF) Annual State Conference will focus on educating families, caregivers, and professionals about the rare and complex genetic disorder, the foundation announced in a press release.

Taking place Oct. 27 at the DoubleTree by Hilton in Sacramento, California, the conference will also emphasize the importance of patients and caregivers connecting with their local Prader Willi syndrome (PWS) community.

Elizabeth Roof, a research associate in the psychology department at Vanderbilt University, will serve as the event’s keynote speaker. She currently coordinates six research programs with patients who have rare genetic disorders including PWS.

Topics to be covered in the conference’s sessions include nutrition, special needs planning, home and community-based services, positive psychology and self-care, behavior management, and exercise. It will also include an overview of the latest PWS research, including studies on behavioral interventions.

Registration fees for PWCF members are $85 for individuals and $150 per couple. Nonmembers of PWCF pay $100, as do PWCF professional members. Non-member professionals pay $125.

A Halloween-themed youth and adult program, taking place at the same time as the conference, will feature games, Zumba, arts and crafts, and a dance party. Fees for that program range from $25 to $50. For those interested, there will also be a meet-and-greet family event Oct. 26.

To register or for more information on these events, visit this link.

PWCF is also an official charity for the 2018 Jet Blue Long Beach Marathon and Aquarium of the Pacific 5k races Oct. 6-7 in Long Beach, California. The nonprofit is encouraging participants to run or walk in the event to raise funds for PWS and increase awareness. To register or for more information, visit here.

PWS is the leading genetic cause of obesity. Symptoms include low muscle tone, an insatiable appetite, and behavior similar to those with autism. According to the Prader-Willi Syndrome Association, up to 1 in 15,000 people have the disease. There is no cure for PWS, but many patients benefit from a supervised diet; in addition, some symptoms can be treated with hormone therapy.

Since 1979, PWCF has supported PWS patients, their families, and the healthcare professionals who serve them with a network of information, advocacy, and other services. The PWCF is supported by donations, grants, membership dues, and events.

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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One comment

  1. Good morning,
    My name is Liza Zickefoose and I am the mother of a daughter with Prader willi syndrome. I have recently written a book on the journey special needs children take from heaven to earth to be with us, and why God created them the way that he did. What many see as a disability is really a blessing in disguise. It was published by Christian Faith Publishing. I wanted to get the word out as much as possible. I am not a professional, and we have no marketing except for ourselves and what Christian Faith Publishing has done. I wish that I could donate the books to the families, but we are not able to at this time. Below you will find the link to the site where the books are sold, and also the small clip in regards to what the book is about. I hope that if you decide to purchase the book, that you enjoy the message. The book is also available on kindle. This is a story that was written from the heart, and I believe the message is really needed at this time. I am doing my best to reach as many organizations as possible. Thank you for all you do!

    Sincerely,

    Liza Zickefoose

    https://www.youtube.com/watch?v=pe8PTf-YYN0

    https://www.amazon.com/gp/product/1643497073/ref=dbs_a_def_rwt_hsch_vapi_thcv_p1_i0

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