PWS Awareness Month- Day 23

Hi Everyone,

Today we are going to talk about the Foundation for Prader-Willi Research!  Andrew and I found them when Kemett was about 6 months old, and immediately decided this is where we wanted to fundraise and donate personally to.  We, along with our amazing co-hosts, are proud to say we have raised over $190,000 in the past two years with our One SMALL Step Walks!  100% of this money goes to research.

When we found FPWR, we found an organization that gave us hope for Kemett’s future.  We also got the added bonus of finding our PWS Family.  At our first conference in 2014, we knew we were in the right place.  It feels so good to be around amazing people who want the same things for their kids and who get it.  They get what you are going through because they are going through the same things.

Two years ago, my walk co-host and I hosted the FPWR National Conference here in Austin.  What a privilege it was to work on this conference, and have everyone come to your home city.  Last year I served as Community Leadership Chair for FPWR which works to connect new families to mentors, resources and provide them with pertinent information through webinars and on private facebook groups.  And last June I became full time staff as the Development Assistant and am now the Donor Relations Manager.

We wouldn’t be doing all of this, if we were not passionate about FPWR and the work that they do.  Below, I have attached their 2015 Annual Report so you can read all about where their funding comes from, the research programs they funded this year and more!

A few years ago there were no clinical trials happening in PWS, but now because of FPWR and everyone who has generously donated we have multiple trials going on, as well as groundbreaking research!  FPWR has also adopted a 5 year research plan that will help accelerate research and development of treatments for PWS.

This is why we educate, spread awareness and bombard you with information all year round.  This is why we ask you for money every year.  It’s because we know they will find something that will allow Kemett to live independently!  Something that will curb his hunger, help behavior and other aspects of PWS.  It’s because the more research is done the more we can understand this incredibly complex genetic disorder.  Please take the time to read the links below to learn more about FPWR.

5 Year Research Plan

2017 Funded Projects

FPWR Annual Report

Thank you to everyone who has supported our One SMALL Step Walk and FPWR in the past and future!

Demand One SMALL Step Fundraising Page

Please let us know if you have any questions!

Love,

The Demands

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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.

 

 

PWS Awareness Month- Day 13

Hi Everyone,

If you haven’t had a chance to see this yet, here is a blog I wrote for The Foundation for Prader-Willi Research’s Story’s of Hope blog series: http://research.fpwr.org/blog/your-child-is-so-much-more-than-a-pws-diagnosis.

Also, don’t forget to get your In It For Kemett shirt!  7 days left.  https://www.booster.com/in-it-for-kemett-t-shirt-sales

Enjoy! Please let us know if you have any questions!

Love,

The Demands

DemandFamilyPhoto

Our family

PWS Awareness Month- Day 2

Hi Everyone,

Today, I wanted to point everyone to FPWR’s Awareness Month page!

There are some really great tools on here to help you raise awareness, change your profile picture, print out a cool coloring page that my friend Quyen designed, and so much more!  As you all know, I work for FPWR and helped put this page along with emails, blog posts and social media posts together, so I hope you will take the time to follow us, subscribe to the emails, and share!

Here is a picture of Kemett’s coloring sheet! As always, let us know if you have questions or want to learn about something specific this month.

Kemett with this coloring page!  He’s also wearing Andrew’s newest Master’s medals!


And we’d love to see your coloring sheet! Mine is below!

Love,

The Demands

Kemett helped me out on this one with those dots!

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.

 

 

New York, New York!

Hello Everyone,

In mid-November, the Demands ventured up to Garden City, NY for the Foundation for Prader-Willi Research’s annual conference.  We finally got to meet other parents from around the country who we had only spoken to on the phone, through email or on facebook.  It felt so good to be around people who understood everything you had gone through because they had been there too.  Even though everyone came from such different backgrounds, we all had one thing in common.  It felt like a long lost family.  I guess if you have to go through something like PWS with your child the bonus can be that you are surrounded by amazing people who want the same things for their children.

The conference was research heavy, so we heard from a lot of scientists, doctors and pharmaceutical companies.  There are some pretty amazing things going on right now for PWS research.   We are hopeful for Kemett’s future.

We also got to spend some time in Manhattan and tour the city.  It was cold and rainy so we did the best we could with the time we were given.

Overall our trip was a success and we came back inspired and motivated to continue raising money and awareness about Prader-Willi Syndrome!

Enjoy the pictures!

Love,

The Demands

 

Hanging out in Garden City.

Hanging out in Garden City.

Kemett enjoying the city!

Kemett enjoying the city!

Kemett's first train ride

Kemett’s first train ride

Macy's

Macy’s

Andy Warhol at MOMA

Andy Warhol at MOMA

Kemett loved MOMA

Kemett loved MOMA

Tree at Rockefeller Center

Tree at Rockefeller Center

Today show

Today show

FPWR Conference.  Angela and I made the program!

FPWR Conference. Angela and I made the program!

The MET

The MET

Degas at the MET

Degas at the MET

Guggenheim

Guggenheim

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!