Prader-Willi Syndrome: Awareness and Hope

PWS hope image

I started 2013 off with many goals that I hope to accomplish in the next 2-5 years. Some are big and are a reach, but you have to dream big, right?

Nutrition has always been a passion of mine and my original major in college was Kinesiology. It was so impacted and I changed majors to Child Development- which I have had amazing opportunities to work with infants through prechool ages. Makenna was born and we had an amazing 10 days with her before she went into the NICU and we got her diagnosis of PWS.

Like most of you, it’s something I had heard of but was clueless. First learning you have a low tone child with failure to thrive, then it’s like a light bulb goes on and bam, it turns in to her never feel full. EVER!!

Ughh, was my first thought, but then, since I am so passionate about health and nutrition, I pushed aside my feelings of being scared, into “How am I going to be an advocate for Makenna and other’s with PWS. Ding! Ding! Ding! My mission is now to spread awareness and help other families not be scared when calories matter!

FPWR logo

Arizona will be hosting its first One Small Step Walk in May for The Foundation for Prader-Willi Research! You can find our fundraising page for Makenna, here. We are so so so ‘Hungry for a Cure.” No donation is too small! Every dollar helps!

PWS-USA logo

My dad and I are in the process of creating water bottles, tumblers and travel mugs with the Prader-Willi logo on them to help create further awareness. When I have final proofs, I will share more information. Right now 50% of the proceeds will be donated back to Prader-Willi Syndrome-USA.

So excited to be apart of an amazing community of people who all want the same goal! Now, let’s get there together!


About Lisa Lamb

This is a way for me to share my passion for living a healthy lifestyle, share my fitness journey and to create low calorie recipes for us and my daughter Makenna who has Prader-Willi Syndrome! Description My daughter was diagnosed with a rare genetic disorder called Prader-Willi Syndrome which in a nutshell, (but please feel free to google for more information) will cause a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity. The food compulsion makes for constant supervision necessary. This page is dedicated to her. She inspires me everyday to live a happy, healthy and active lifestyle. I want to create a healthy environment for her. With my passion for nutrition and fitness, I hope I can spread awareness about PWS and create healthy recipes for her to enjoy with never feeling deprived. She has given me new hope to move forward with my passion in nutrition and become a Registered Dietitian. My focus will be on childhood obesity, emphasizing in PWS. I look forward to sharing my journey with you all! ***Please note I am not a Registered Dietitian. I would classify myself as a "nutrition snob." I do all of this because I love learning about food and fitness. All the recipes posted are tired and can be adjusted to your lifestyle. ***
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