Kim Henige • about 14 years ago

I thought this was a "move" initiative. Although I agree that it is a wonderful cause and very important, it does not seem to fit the contest.

Ali Shenk • about 14 years ago

Hey Kim,
I totally understand where you're coming from, and I know reading all these personal statements about how PWS affects our loved ones' lives might seem off-course with the topic. But really, the lives of people with PWS literally depend on a healthy diet and plenty of activity. People with PWS have a greater percentage of body fat compared with the general population, and so they can have many of the effects of obesity even without being overweight. If anyone is going to lead by example to show our country with a healthy lifestyle NEEDS to look like, it's the PWS community. In addition, research regarding PWS is looking into the genetic causes of obesity - how great would it be if research for PWS could unlock the genetic causes of ALL obesity? What a gift to our country that would be. And that is exactly what PWS researchers believe it will do.

Jack Gardner • about 14 years ago

I wish daily that my twin girl's didn't cry for food or have to feel this constant hunger. As a parent all I want is to comfort and protect them from the world but thier hunger is something I can't take away or fill. They are almost 6 now and the loves of my life but they deserve what we all take for granted every day the feeling of being full.

Tracy Dixon • about 14 years ago

I have a daughter who will be 5 years old in a couple of weeks. Last year we attended our first ever "One SMALL Step" walk. At the time we decided to be a part of this walk, my daughter was still using a walker and I thought to myself, "how is she ever going to be able to walk 2 km, especially without her walker to lean on?" We walked everyday for months. First it was just down to the end of the road and back. After a month we made it to main st. 2 blocks away, then home again. It was a struggle. Some days that 2 blocks took an hour, but we eventually got stronger, walked farther, and now there's no stopping her. We were the last ones to finish the walk but we did it and she even managed to dance the afternoon away to the music that was playing.Our community from seeing her day in and day out walking, would and still do, wave to her or follow along with us. Our PWS community cheered us on through facebook and kept us going with inspirational sayings and lots and lots of love. Her birthday is actually May 11. How great would that be to win this competition on that day for her and all the people and their families who were suffering from this disorder. God Bless.

Renay Compere • about 14 years ago

I am so inspired by the PWS community and how hard parents work to keep their children with PWS thin and healthy. Imagine only being able to consume 1200 calories per day for the rest of your lives? We as parents need to be creative with meals without using high caloric sauces, oils and sugars. Our children are not rewarded with a trip to the ice cream shop or candy store for their successes in life. Instead we use rewards that will get them moving; an afternoon at the park, a swim in the pool or a trip to the beach. We not only educate our own children about healthy eating but everyone around us. I have certainly learned a lot about nutrition and the impact food choices has on our health as a whole. I truly believe that when treatments and answers are found for PWS, those in the general population suffering from obesity will be helped as well.

Julie Casey • about 14 years ago

@Kim

The Let’s Move! campaign actually has three areas of interest: (1) healthy eating, (2) physical activity, and/or (3) access to healthy affordable food. The first two are crucial for people who have Prader-Willi Syndrome and raising awareness and educating the public about the vital need for these components in managing PWS is part of the One Small Step message. The PWS community was thrilled when Mrs. Obama announced the Let’s Move! campaign and took on obesity as her pet cause; we all hoped this would open up opportunities for PWS. Winning an opportunity to talk about PWS is such an opportunity!

It is a matter of life and death for people with Prader-Willi Syndrome to eat healthy, but it goes even deeper than that; parents of kids with PWS battle for healthy eating on a daily basis. We battle to stop schools from constant classroom parties, we battle schools to stop rewarding kids with food, to stop using food objects in lessons; we fight to educate our family and friends that our children need appropriate portions of nutritious foods and that yes, one little cookie will hurt. These measures (and many more) are crucial for people with PWS, but as one of my fellow moms pointed out these are habits everyone should adopt. It is our intent to educate everyone on healthy eating.

Exercise is another crucial part of managing PWS, however because individuals with PWS have hypotonia (low muscle tone) their endurance for exercise is reduced; add to that balance and coordination problems and you get an uphill battle to get the people who need exercise the most to be physically active. But that is precisely what we do – it literally starts with One Small Step…one delayed step, one unbalanced and unsteady step, but that One Small Step leads to another and another. Parents all across the globe are taking those steps to keep their kids healthy. Parents all across the globe are organizing One Small Step walks to promote precisely what this campaign is all about – healthy eating and regular exercise.

@Josh

The reason the kids you saw don’t look obese is because of the extreme measures their parents have taken to ensure that our kids are eating healthy and exercising. It’s a daily battle made harder because of the unhealthy habits that have invaded our society. Unfortunately many people with PWS are indeed obese even with the hard work of their parents. This is why the PWS community is thrilled about Michelle Obama’s Let’s Move! campaign and the opportunity to spread the message of healthy eating and regular exercise.

Prader-Willi Syndrome is so complicated – there’s so much more to it than just healthy eating and regular exercise but the opportunity to take One Small Step by meeting with representatives from the Let’s Move! campaign to talk about Prader-Willi Syndrome and the healthy habits we’ve seen work in a population genetically pre-disposed to be obese and to bring attention to research that could lead not only to answers to PWS but to general obesity issues, that is the first step. See, we’re not just trying to create a healthy lifestyle we’re trying to save lives. And as Confucius said “a journey of a thousand miles begins with a single step”; One Small Step is the beginning of our long journey.

Katie Kearns Jackson • about 14 years ago

My daughter was misdiagnosed at age 1.we were told she had CP and that was why she was so floopy,failure to thrive, couldnt hold her head up at 6months or sit up ,she never crawled and only started to walk at age 3.we had her tested for PWS at age 1 but the test came out neg. now she turns 5 and all of a sudden puts on 20 pounds in less than a year..she only weigh 25 pounds up to that point...more testing this time with DNA and bingo she not only has CP but also is aPWS kid....there is nothing like mourning for you child twice,and watching her struggle every day kills me,but with growth harmones and a strict diet my daughter is starting to finally grow,she was such a little peanut andnow is becomming a big girl.We havent had to lock anything up yet...but can see it comming. We are still very new to this and are learning as we go along...it's a very rough road and the little girl they said would never walk or talk is running circles around us...we are blessed every day!!!

Joanne Fraess • about 14 years ago

I vote for a cure to the feeling of starvation for these children. My niece Ashley has PWS and I can not even begin to imagine how trying it must be to get through a day, a minute even..without thinking about food, without feeling like you are starving. To never feel full, to have constant hunger and to have to focus on the day's activities when your stomach is aching for food, how impossible that task would be. There are a host of other problems that go along with PWS, mental and physical challenges....my sister says her beautiful daughter is perfect the way she is ...she just wants her to not feel hunger anymore. Find a cure for PWS.

Megan Theis • about 14 years ago

I babysit an adorable child named Nick who has Prader-Willi syndrome and he is such inspiration! He has benefitted greatly from the growth hormone and I hope more kids have the same opportunity. His mom is the most caring woman I have ever met. It doesn't take a lot out of your life to vote for this video! Please support this cause. TAKE ONE SMALL STEP!

Denyce Fernando • about 14 years ago

My dear sweet nephew Jeremy has PWS. It breaks my heart when the family is together celebrating and sharing a meal. Jeremy wants, but can not have. My Sister and Brother in-law Jeremys parents are amazing. They are doing an amazing job with Jeremy and helping him cope with this illness. I pray for a cure.

Petra martinez • about 14 years ago

I have an 18 year old son with PWS. Never before have I been faced with such legal challenges as I have been getting him ready for adult hood. Many people do not understand that he will never be able to be completely independent, due to his drive for food. Some see me as hindering him because I recognize the delicate balance of "least restrictive environment". I would love for him to be able to live on his own, get married and have a job unsupervised! However, that is not my sons reality. Never before has a person with PWS been successful living independently.The honest truth that is so hard to hear....... they die. I know it is heart breaking! The sooner we get national recognition and everyone to really understand the challenges our kids face, the better quality of life we will be able to provide for those suffering with this extremely difficult syndrome. Thank you for listening!

amanda shoust • about 14 years ago

Im voting for Jeremy! my "boyfriend" in OC! God Bless his wonderful family for doing all they can to ensure he has a wonderful healthy life and also to fight to find a cure!
xoxo fernandos love you.

Donna Miller • about 14 years ago

To Petra m: My mother had my brother Scott declared legally incompetent and had herself appointed guardian and my sister and I co-guardians upon her death. This allows the guardian to make the legal decisions and act on behalf of the PWS adult. I can't imagine what our lives and Scott's life would be like if we didn't have the authority to care for him properly. People with PWS cannot live on their own, period. They need help, and depending upon their mental capacity, decisions must be made for them. I highly recommend seeking legal advise on the options in your state regarding incapacity.

wendy roberts • about 14 years ago

As a mum to a 6 year old with PWS. Like so many of you our daughter was thought to have PWS at birth but took a further 6 months to confirm. Grace has the rarest form. So far the hunger thing hasn't kicked in and is the food police in our house! At birth I was shell shocked with the diagnosis and thought our world was about to end. 6 years on I count Grace as a blessing and really proud that she's our daughter. If I had a magic wand to cure her PWS , would I remove. It yes I would! Life can be hard enough as it is with out the constant hunger, poor IQ, struggling to communicate, struggling to mix with others and all the other challenges she faces day to day. She never complains, reminds me when she needs her GH, and I kind to every one around her. She is a blessing . So lets do something for everyone with PWS and help find a cure for hunger. I'm watching the vote from the UK and praying you win this, because it's not just the kids in the USA that benefit its children all over the world

Christal Watts • about 14 years ago

I take issue with the statement that "never has a person with PWS lived independently" because that statement is not true. My younger brother, who is 43 years old, has lived in his own apartment for over a decade. Have modifications been made so that he can enjoy his independence? Absolutely. However, Jon has done so and has been able to enjoy living his life as an independent adult.

Serina Lee • about 14 years ago

I have a Niece AND Nephew with PWS, in the same family!! It is a struggle everyday for them!! I give so much credit to my sister and brother in law for all that they do! I know it is hard to have just one special needs child much less two! They are so patient and loving when I know at times they probably just want to throw thier hands in the air and say, "I GIVE UP!!!" Kaitlyn is now 16, and Jacob is 10. They are a joy to have in our family! I Vote for them!!!

Jane Harrison • about 14 years ago

I work with a chiropractor who had the most adorable little boy with PWS and he deserves the the best life has to offer. God bless.

Robin Rabens • about 14 years ago

Our beautiful son Jackson lights up when he gets his food. Every food item is scheduled and low in calorie. We forgo most social events for they are so stressful for our family. He perseverates many times a day about what he's going to eat. Food rules our life. The parents of children with PWS are the most awesome people I know. I have learned so much from them. There is nobody more motivated to find a solution. I am so proud of this community. Thank you for all that you do everyday to support our children.

kristy spencer • about 14 years ago

I am voting for my great nephew Logan. Hope this can really get some help for all Prader-Willi kids.

kristy spencer • about 14 years ago

I am voting for my great nephew Logan. Hope this can really get some help for all Prader-Willi kids.

kristy spencer • about 14 years ago

I am voting for my great nephew Logan. Hope this can really get some help for all Prader-Willi kids.

Robert Schoenberger • about 14 years ago

My awe of the effort of the GLOBAL PWS community of families continues to grow. The comments have been a source of inspiration while not diluting the facts. As a reminder to the non-US citizens I have read the rules and no where does it say you can't vote, all you need is a valid email address and password and make sure it is one vote per person. And don't forget to include your family and friends because we are all bound by the same cause, to help the existing PWS kids and adults and to make PWS a non-issue for those who are not born yet and their families. I borrowed a sort of changed verse the last time I commented and I am going to borrow another one unchanged. Because of the joint effort of the PWS Global community and the dedication to getting our message out through this initiative there is NO DOUBT in my mind that "WE SHALL OVERCOME!"

Robert Schoenberger ( a prouder PWS Grandfather )
Elizabethtown, PA

You folks are just outstanding.

Brandy Boucher • about 14 years ago

My son is 13 and was diagnosed shortly after birth with Prader Willi Syndrome. We will do everything it takes to help raise awareness and improve the quality of life and futures of people that suffer the every day challenges that this syndrome forges upon us. Michael has brought so much joy and love into our life and we would love to help do that for other families!

Julie Casey • about 14 years ago

@Amy

Please take a look at my prior comment, as well as a few of the others that explain that One Small Step (and the PWS community in general) is about WAY more than finding a cure. Of course we want that, but that was not the purpose of entering this contest at all. As I explained in my prior post, we are perfectly aligned with the Let's Move! priorities...educating the public about healthy eating habits and regular exercise is what we do on a daily basis. We have a variety of ideas and methods that are used for our kids with PWS, but should be used for ALL children (for example - not using food items as rewards in schools). We want to partner with Let's Move! in order to spread our successful methods to the larger population. Our kids are pre-disposed to be obese so obviously techniques that are successful with them are going to be all the more successful in a population that is not pre-disposed toward obesity.

Sheri Shenk • about 14 years ago

only a few years ago, no one in our family had heard of PWS. Now, due to the poignant and determined voice of our cousin's wife on behalf of their young son, we understand all too well what this horrendous syndrome can do . . . not only in the life of the one who is diagnosed, but in the lives of family, friends, doctors, teachers and entire communities. Please pray for the breakthrough that will come when $$$ for research are made available. VOTE for PWS.

Take One SMALL Step!!

WINNER: Exceptional Achievement

Try it out

176 comments