Texas Prader-Willi Association

2014 Golf Tournament: Monday, May 12, 2014

It's that time again! Monday, May 12th marks the 4th Annual Texas Prader-Willi Association Golf Tournament. See if you can get a team together or come out on your own to play. We will hook you up with other single players. If you can't get out to play, please consider sponsoring a hole (good advertising for your company!) or some families have sponsored holes in honor of their child. There are also trophy sponsorships, a beverage cart, lunch and dinner underwriting available. The barbeque at The Olde City Pub follows the golf game with raffle prizes, live and silent auctions, and LOTS OF FUN!  Please join us and help us raise money for this very worthy cause. ALL proceeds go to charity, primarily to provide camp for children (and adults) with PWS. We've been able to run the camp since the first golf tournament -- see our camp photos on our Facebook page! This year's People With Smiles Camp is already scheduled for June 28th to July 1st at the Peaceable Kingdom campsite in Killeen. We hope to see you on May 12th. We are very grateful for your participation!

For more information on the golf tournament click here: http://angelm1088.wix.com/pwsgolf


Chili Cook-Off Success!

Our 4th Annual Chili Cook-Off and Margarita Contest benefiting TXPWA was a huge success raising over $6000
The cook-off was held on April 12, 2014 at Molly's Pub. Chili and margaritas competed for the glory of being this year's Molly's Pub Chili/Margarita champ! Thank you to all the hard workers that dedicated time and energy into this event to benefit TXPWA! 

People With Smiles Camp: June 28-July 1 in Killeen
We've put our heads together in planning the camp activities and dining plans to host another successfully smooth and fun camp experience. We have space to host up to 40 campers with Prader-Willi Syndrome at “People With Smiles” Camp 2014. Come join us June 28th - July 1st, 2014 at Peaceable Kingdom Camp in Killeen. Must be 8 years old or older and have PWS. 

For more information visit our camp website: http://pwscamp2014.wix.com/praderwillisyndrome

Background

Prader-Willi Syndrome (PWS) is a non-inherited genetic disorder that occurs in approximately one out of every 15,000 births. PWS affects males and females with equal frequency and affects all races and ethnicities. It is caused by a group of inactive genes on the 15th chromosome. PWS is a spectrum disorder and symptoms vary in severity and occurrence among individuals.

Symptoms of PWS are believed to be caused by dysfunctions of a portion of the brain called the Hypothalamus. The Hypothalamus is a small Endocrine Organ at the base of the brain that plays a crucial role in many bodily functions, including hunger and satiety, temperature and pain regulation, fluid balance, puberty, emotions, small hands and feet, Scoliosis, sleep disturbances with excessive daytime sleepiness, and fertility. Behavior difficulties may include obsessive-compulsive symptoms, picking at the skin, and controlling emotions.
 

Who We Are
The Texas Prader-Willi Association was created by Texas families in order to enhance the quality of lives for all affected by Prader-Willi Syndrome (PWS). We are available for support, education, and advocacy. For more information about PWS please visit the Resources page on our website.  For newly diagnosed families, please visit the Newly Diagnosed page.

 

How to get Involved

For 2014 we have added several new board members to help us positively impact all lives associated with Prader-Willi Syndrome.  We are better together, so team with us to help us reach our goals for our PWS community! If you have an idea that could be useful, please let us know!  Once you

register with this site, you can goto the TXNetwork to post comment/questions or goto the TXPWA Membership link to become a full member & get connected today! You must register with this site first to get started. To register, click here.
 
Why join TXPWA?

Official Memebership gives you access to web pages with important Texas special needs & PWS insight from other Texas parents.  This includes but is not limited to the following:

  • Birth to 3 years newly diagnosed check list
  • 3 years & older newly diagnosed check list
  • Board Meeting Minutes
  • TX Group & Residental Homes for Prader-Willi Adults & Teens
  • Parent & Medical Resources
  • Nutrition
  • A forum to sound off questions
  • A means to meet other Texas PWS families

Consider Joining today!  Click here to join TXPWA. 

Note: The first year is free to newly diagnosed families.  Click here if newly diagnosed.

 
Ways to Help!

We currently are looking for help in the following areas:

  1. Writers, Layout Editor, and Project Manager for our Newsletter.
  2. People willing to advocate at a state level to create better resources in TX for those with PWS.
  3. Support group organizers for all areas across TX.
  4. People willing to help with upcoming TX conference.
  5. Camp
  6. Fundraising for our Association
  7. Other - please feel free to share ways you feel you can help us by e-mailing us @ www.info@txpwa.org  

Questions?

Have a question for us?  Just email us!  Click here!

Newly diagnosed?  Click here!

Lisa....test 1.2.3.
Michele Secor :)
Cleveland, Ohio Spring 2010
Michelle - FEARLESS!!
Helpful Suggestions
  • For skin picking, Desitin (Zinc oxide diaper rash ointment) works wonders for healing picked skin almost overnight.
  • For bed wetters, "GoodNites" disposable bed mats are available at Kroger and Walmart. About $10 for a pack of nine.

Some tips for snacks with a good volume for a low calorie count:

  • Dannon Light & Fit Greek yogurt - 5.3 oz. - 80 calories.
  • Kroger CARB master yogurt - 6 oz. - 60 calories. 
  • Activia Light - 4 oz. - 60 calories.
  • Sargento 2% cheese sticks are 50 calories each.
  • Fiber One bars are 90 calories each.
  • Motts individual apple sauce - 4 oz. - 60 calories.
  • Sunkist tuna packets - 2.6 oz. -80 calories.
  • Bumble Bee tuna salad - 1 snack box - 80 calories.
  • Emerald nuts - 100 calorie packs
  • Fiber One - 80 calories per 3/4 cup.

...Stay tuned for more ideas next week! Feel free to send us some of your suggestions/ideas - we'd love to hear from you!

TXPWA News
Annual Oklahoma PWSA Conference
8/13/2014 6:01:00 PM
Attention North Texas families, the Annual Oklahoma PWSA Conference will be on Saturday, September 27, 2014
TXPWA attends Sunset Advisory Committee Meeting
6/30/2014 4:28:00 PM
On June 24th and 25th, 2014 member of the TXPWA met in Austin, Texas to give public testimonies on behalf of those living in Texas with Prader-Willi Syndrome....
TXPWA Meets With State Officials
8/2/2013 5:01:00 AM
Vice President June Finnerty along with Board Members Cheri Wood and Tom Noonan met with state officials in Austin, TX on July 30, 2013 representing the TXPWA to discuss legislative issues concerning PWS. This journey began last November 2012. They were encouraged and expect this to be just one of many to come in working towards much deserved rights for our loved ones.
RECAP: Texas PWS Round-Up 2013
2/11/2013 3:44:00 PM
Our "Texas PWS Round-Up" conference this past weekend was a phenomenal success. Attended by over 200 people, we learned so much invaluable information. I will do my best to share some of the highlights with you over the next few days..... Check out some photos and videos from the conference by viewing the event page on Facebook. Feel free to connect to new PWS families and old. We look forward to sharing some more information with you about this informative event!
Newly Diagnosed

 If you have recently received a diagnosis of PWS for your child, please click here to learn more.   Newly Diagnosed page

 

TXPWA Shop
We are selling Texas Prader-Willi Association tee shirts in "bling" and "non-bling". To see photos click here. Proceeds go to TXPWA. For more information, or to place an order, email Lisa Tucker Wilmes at Ellepea71@gmail.com
Texas Prader-Willi Association