Getting ready for PWS Awareness month 2014

May is Prader Willi Syndrome Awareness Month Usually for this month there is a challenge about giving something up. However,  to my family and friends, I would like to propose to you another challenge.


For the month of May, I would like to challenge you to try  and live life like my daughter will need to for the rest of her life.


I understand that life is chaotic, that it is busy and unpredictable.  This chaos and unpredictability is also in each person who is living with PWS life as well.

I have three options for the challenge, you can choose depending on the level of commitment you would like to give to PWS awareness month.



1. Commit just a week ( or two!! ) to counting your calories, and if you are up to it, set a HEALTHY maximum caloric limit that you will not exceed for this time.


2. Commit to tracking your daily calorie consumption for the month of May.  (This will provide great insight into your eating patterns, and you will be able to visually see where you are getting most of your calories and nutrition.)


3. Commit to setting a HEALTHY daily caloric maximum and tracking your calories for the entire month of May. (This is the closest reflection to my daughters daily life.)


Optional – Pair any of the above options with daily exercise.


People with PWS not only have an insatiable appetite, but also a metabolism that only works at about 60% of their typical peers.  This means that not only are they always hungry, but they need to be even more closely monitored in their calorie consumption.  Since the day Emelyn was born, I have monitored every calorie she has consumed. I spend hours each month specially preparing nutritious low calorie meals for her so that she will get all the nutrition and food her body requires. Taking care of Emelyn is a full time commitment.  She requires healthy low calorie meals, as well we plenty of physical activity( which is hindered by her low muscle tone causing her to tire very easily).

I hope I can count on you to help spread awareness of this rare and life threatening syndrome.  With your help we are one SMALL Step closer to eliminating the challenges of Prader Willi Syndrome.

To track Calories and nutrition we use the myfitnesspal App which is available for iPhone, Android, Blackberry, and Windows Phone. You can also use My Fitness Pal by visiting their website .  I am more than happy to answer any questions and offer any assistance you may need if you chose to partake in this challenge.

4 responses to this post.

  1. Posted by Traci Bair on April 23, 2014 at 3:22 am

    I will do option #2 to the best of my ability.



  2. […] « Getting ready for PWS Awareness month 2014 […]



  3. Posted by Maxine Demmler on April 24, 2014 at 1:35 pm

    installing fitness pal on my iPad you will be the first to know if i need help

    m xo



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