Texas Prader-Willi Association

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How to get Involved

2011 is a new year with new goals.  Join us & help make them happen!  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!  We do consider giving free memberships ($25 annual fee) to those who can not afford one.  You do need to register with this site first to get started.  To register, click here.

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.

 

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.

Questions?

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

Newly diagnosed?  Click here!

Newly Diagnosed

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

News

Residential Home for PWS

Wed, 18 Jan 2012 04:08:00 GMT

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. Since it is an HCS home, there will be no more than four ladies living in this home. The staff is currently being trained to better serve the needs of our PWS population and is planning to have this home opened towards the end of February! If interested, please send an e-mail ASAP to info@txpwa.org. If you are interested in PWS specific housing throughout the state of Texas, and either are not part of the HCS program or have a son with PWS, or this new location will not work for another reason, please e-mail us and let us know the area you are in and the residential program your son or daughter receives funding from so we can determine where the interest in Texas is. Our goal is to work with providers throughout the state to develop housing to meet the needs of our PWS community. We currently have one provider in Texas that can cater specifically to PWS. This new provider makes two. We know the needs in the state are great and we are working towards the goal to meet these needs in the future. Thanks & Regards, The TXPWA Residential Committee

"People With Smiles" Camp

Fri, 04 Nov 2011 14:02:00 GMT

Thanks to all who worked so hard to make our 1st TX PWA "People with Smiles" camp a huge success.  With lots of planning, the camp was a safe and fun experience for those with PWS.

TXPWA Camp is FULL!!!

Tue, 16 Aug 2011 02:55:00 GMT

TXPWA "People With Smiles" camp is officially FULL !!! With nearly 50 people in attendance we're sure to have a great time. We are thrilled with the interest and cannot wait for the fun to begin! There will be video and pictures following camp that we'll post on our website listed above.

Oct 2nd One Step Walk - Round Rock, TX!!!!

Fri, 05 Aug 2011 02:15:00 GMT

A group of Stony Point High School International Baccalaureate and Health Science Academy students are hosting a One SMALL Step event for Prader-Willi Syndrome Research at Old Settler's Park in Round Rock, Texas on Sunday, October 2. The goal is to promote health and fitness for all children.    We are expecting 200+ people to attend the run/walk. In addition to the run/walk, we will have entertainment for the whole family, including a DJ, bounce house, firetruck, face painting, etc.   We would also like to have booths set up for organizations/companies to share information about their products/services that tie into our focus...health and fitness for all children.   If you know of any organizations/businesses in our area that might be willing to help out with our event, or set up an information booth, please let me know right away.   The students have an event page set up on Facebook...Greater Austin Area One SMALL Step 5K Run/1K Walk.   Here is a link to our online fundraising page:   http://onesmallstep.fpwr.org/dw/walking/location/51   Your help is greatly appreciated, Stephanie

First Annual Molly's Pub Charity Golf Tournament BIG SUCCESS!!

Fri, 24 Jun 2011 19:04:00 GMT

The final figures are in for the First Annual Molly's Pub Charity Golf Tournament benefitting Texas Prader Willi Association, held on May 23rd.   We raised $23.487.00!!! We are so thrilled and very grateful to everyone.   We're hoping next year will be even bigger and better. We are looking forward to it!   I want to sincerely thank everyone who participated, played, bought a raffle ticket, donated to the auction....whatever....it all added up. It was a fantastic day and I am so excited to have raised this kind of money to benefit our children with this challenging disorder.   Sincerely, June Finnerty

TXPWA Camp Aug 27th & 28th, 2011

Thu, 09 Jun 2011 01:21:00 GMT

ATTENTION ALL: The TPWA is hosting it's first Prader Willi Camp for person's with PWS only. Date - August 27 & 28, 2011. Place - Riverbend Retreat, Glen Rose, Texas. Since this is our first year we are doing a trial run and accepting only 15 campers this year. WE CURRENTLY ONLY HAVE 2 MORE SPOTS OPEN! Each camper will have their own 1:1 counselor with them throughout the weekend. There are plenty of handicap accessible activities we have planned for our camper's that Riverbend Retreat offers such as swimming, an inflated floating rock climbing wall and the ever so popular ZIP LINE that is handicap accessible! We don't want to give out all of our plans but I can promise you one thing, it's going to be a GREAT time!!! All food will be secured at all times. We are thankful to have found such a wonderful camp location that has been more than willing to work with us. We'd love to have you join us!! Yee Haw Y'all !!! Please contact Cheri Wood at 903-520-5178 if you're interested.

Trevor at 2011 Cy-Fair Technology Festival

Tue, 01 Mar 2011 03:19:00 GMT

Trevor was invited to participate in the 2011 Cy-Fair Technology festival.  He made a 30 second video about where animals live.  He also pick the music to play while the slide show went.  He picked the Bomm bomm bomm booooooomm song as he puts it (Beethoven 5th).  He played his video from 6-6:30 on January 27, 2011.  Trevor was so very excited.  He sat behind the table and just smiled and said HI to people he knew.  We are so very proud of him.  After the show Trevor and I had our dinner date.   It  was an amazing evening. Very proud parents and sister, Robin, Tony and Rebecca

Prader Willi Syndrome: Kids who can't stop eating

Thu, 03 Jun 2010 19:43:00 GMT

KHOU Channel 11 News in Houston, TX did a short news piece on Prader Willi Syndrome this week. The piece features TXPWA members the Lang's and their son Trevor who is 8. Read more for video link.

Michelle & Tracy
Texas Prader-Willi Association