Texas Prader-Willi Association

People With Smiles Camp: June 28-July 1 in Killeen
Our camp was, once again, amazing!!!  We had 3 days of playing, climbing, swimming, and crafts.  We had a wonderful campfire night with songs and (calorie conscious) s'mores, we had karaoke, and our much anticipated dance with lots of great music, dancing and games.  Getting dressed up and ready for the dance was almost as much fun as the dance itself. Our well timed snacks and creative, delicious meals kept our campers (and counselors) happy. Peaceable Kingdom has proven to be a great location to host our camp. They go out of their way to accommodate our needs and make this such a memorable event for our campers. 
We are already looking forward to next year!!! We will post the dates for next year's camp as soon as we get them!!  Stay tuned for our surprise theme to be revealed!!


Check out the fun here: People with Smiles Camp 2014

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!

Michele Secor - YESSSS!!!
Michele Zipline Ready :)
LOOK MA .... NO HANDS!
Lisa & Michelle ... classic :)
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!

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The tireless efforts of our legislative team have made our voices heard!!
We have received the preliminary report regarding Prader-Willi Syndrome for Senate Bill 7
TXPWA News
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!
Residential Home for PWS
1/17/2012 10:08:00 PM
Are you interested in a residential home that caters specifically to those with PWS? We have good news! There is a new PWS specific home opening within Texas! The provider is looking for several more ladies with PWS to become their newest residents. This home is an HCS home, therefore you must already have HCS funding for your person with PWS or be able to obtain HCS funding by means of switching from the current program your person with PWS already falls under.
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
2014 Fundraisers!

Chili Cook-Off

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! 

Golf Tournament

Our golf tournament was an amazing success this year!! We raised over $60,000.00!!! There was a huge turnout for the game and the After-Party was packed!!  We were so fortunate that the heavy rains held off until evening, but it did make for a tough drive home. 

We are so grateful to all our benefactors. We extend a huge THANK-YOU to all our sponsors, to those who came out to play, and to all who donated so generously.  Another huge THANK-YOU to all our volunteers who worked tirelessly to make our event such a success. We could not do this with out you, and we appreciate you more than you can imagine. 

There were awesome items in our live and silent auctions, and our new "Chinese Auction," run by siblings of kids with PWS, was extremely popular.  

Again thanks to all who participated and we look forward to seeing you again next year!!

Our "Save the Date" for the golf tournament next year is: Monday, May 11, 2015

Texas Prader-Willi Association