PWS Awareness Month- Day 22

Hey Everyone,

 We hope that you all will join us for our 3rd Annual One Small Step Walk!  Details are below.  

One Small Step Flyer 2017-01 (1)

 

Love,

The Demands

 

One Small Step Walk for Prader-Willi Syndrome Research at the Belterra Recreation Center in Dripping Springs, Texas on October 10, 2015. Photo by Lauren Gerson.

 

 

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PWS Awareness Month- Day 9

Hey Everyone,

After yesterday’s announcement, I’m sure you are wondering- Are they going to put a walk on this year?

This year we will not be hosting a physical walk.  We will have a month old and our co-host Angela is super busy with her four kids!  So we’ve decided to sort of take this year off.  Instead, we will be doing a virtual walk full of fun challenges!

One Small Step Dripping Springs Virtual Walk

October 15, 2016

Wherever  you are!

We would love for people to get active in support of Prader-Willi Syndrome, as well as active on social media!  First, we will talk about the challenge, and then about what we’d like for you to do!

The Challenge!

We are asking people to do an activity by October 15th that will involve the number 15 for the 15th Chromosome: #15forthe15th

Here are some examples:

  • Walk/Run 15 miles
  • Walk/Run 15 minutes a day
  • Take 15,000 steps a day/week
  • Swim 15 miles
  • Do 15 sit ups/push ups a day
  • 15 days in October to Raise Awareness about PWS
  • For 15 days give up sugar, your favorite food, or exercise daily
  • Raise Money!  Ask your friends to make donations- “I’ll do 15 push-ups for every $50 I raise for FPWR!”
  • Get together with your friends/family in your city
  • Find something that interests you and set a goal. Get creative! We want to hear your ideas!

Then What?

  • Announce your challenge on social media!
  • Use the hashtags: #15forthe15th, #OneSmallStep, #InItForKemett, #FPWR
  • Take pictures and post your progress on social media!
  • Join our event page on our One Small Step Walk Dripping Springs Facebook Page to encourage others and hear about challenges!

You can start now or wait until October!  No matter what you decide, we want everyone to be excited about raising awareness about PWS and One SMALL Step!

We will talk about The Foundation for Prader-Willi Research next week and all that they do for our kids!

As always, please feel free to ask us any questions and let us know what challenge you are accepting!  We will announce ours later today!!

Love,
The Demands

 

One Small Step Walk for Prader-Willi Syndrome Research at the Belterra Recreation Center in Dripping Springs, Texas on October 10, 2015. Photo by Lauren Gerson.

One Small Step Walk for Prader-Willi Syndrome Research at the Belterra Recreation Center in Dripping Springs, Texas on October 10, 2015. Photo by Lauren Gerson.

 

 

One SMALL Step!

Hi Everyone,

We had our first One SMALL Step walk on September 13!  It was a cold and rainy day.   We were not sure anyone would show up, but we were pleasantly surprised.  We had about 200 people come out in this terrible weather to support our family and the other seven PWS families that came.  What an amazing and humbling experience.  We are so lucky to have such a great support system around us.  We had a large raffle, a wine raffle, a raffle for a vacation, face painter, Zumba instructor, photo booth, bounce house (which we didn’t get to use) and bbq donated.  We also had great volunteers and in-kind donors.  This event would not have happened without the support of our community and their generous contributions.

Kemett is a star!  Here is a link to a great news story our local fox station did about Kemett and my co-hosts son, Joseph.

I am excited to announce that we raised over $117,000 for the Foundation for Prader-Willi Research.  100% of this money will go to research and clinical trials.  FPWR’s mission is “To eliminate the challenges of PWS, through the advancement of research.”  Andrew and I are so hopeful that Kemett will get to live his life FULL!  He will  have his dreams come true!  The future is bright and we feel so lucky to be a part of this, to contribute and make a difference.

I am also excited to announce that Angela, my co-host, and I won Hosts of the Year at the FPWR conference!  We raised the most money in the world and will get to host next year’s conference here in Austin, TX!  Of course we could not have done it without the fundraising efforts of all of the Austin area PWS families.

If you missed it, here are some great pictures below of our event, thanks to Blackbird Film, CO.  I hope you all can make it out next year!

Love,

The Demands

 

Group shot!  Thank you everyone!

Group shot! Thank you everyone!

Andrew, Kemett and I!

Andrew, Kemett and I!

Welcome!

Welcome!

Zumba!

Zumba!

The Frederick's!

The Frederick’s!

Demand Family

Demand Family

Angela, Joseph, Kemett and I

Angela, Joseph, Kemett and I

Ready, Set, GO!

Ready, Set, GO!

Walk for Kemett!

Hi Everyone!

We are raising money for the One SMALL Step, Dripping Springs, TX, fundraising campaign and need your help!  On September 13, we will be walking for Kemett!

You can help by giving a few dollars or creating your own personal fundraising page for the One SMALL Step walk, which funds Prader-Willi Reserach.  By funding research, we can help eliminate the challanges of Prader-Willi Syndrome.

It is easy to create a personal fundraising page, come up with a goal and ask your family and friends to make a small donation.  To get started, go to http://onesmallstep.fpwr.org/dw/walking/location/1017

The donations are given online and go directly to FPWR.  All you need to do is email the link of your webpage to friend and family.  Share it on facebook and twitter.  Then let your contacts do the rest!  You’ll get an email when someone donates to your page.  They’ll get a “Thank you” email from FPWR!  You can follow up with your own if you want.

Please visit my page to learn more abou tthis great cause and Kemett! I hope you will join our team: http://onesmallstep.fpwr.org/dw/users/mdemand/DrippingSprings2014

Love,

The Demands

Walk with me!

Walk with me!