• 90 comments

  •   •   over 11 years ago

    It will be embarrassing to have to inform all those people here in Germany that the PWS video they voted for did not win and what is worse - that it does not even get a mention in the final list of video entries. I also smell a huge rat. The highly unconventional , if not undemocratic selection procedure of your organisation will not go down well over here, I am afraid.

  •   •   over 11 years ago

    Irwin F,

    I'd like to know why organizing walk/run events across the nation and world would not be considered promoting exercise. These events are not all about the fundraising, they're also focused on living healthy, which is a must for someone with PWS.

    I hosted an event last year at a local race track. The snack bar at the track normally sells the typical hot dogs, burgers, fries, chips, and even deep fried battered Oreos. The offerings for the walk/run I hosted were drastically different. We offered chicken wraps, apples, carrot sticks, and such. Because everyone liked the chicken wraps, they're now offered on the track's menu. That wouldn't have happened without the walk/run having been held there. One of my most favorite moments was seeing the mother of a 23 year man with PWS moved to tears of joy because she watched her son run for the first time. Was all of this expressed in the video? I don't know, I can't remember. The point is that your opinion that it's all about the research and raising money is just not an accurate view of what all this community of PWS parents, friends, and family actually is. They lean on each other, they share ideas, they rally together to help make the schools safe for each other's children. I say make them safe because of all the high calorie food and "treats" that ravage our schools are not safe for a child with PWS. This community is making a difference on many different levels by taking One Small Step at a time and I'm proud that my family has been able to be a little part of that. I hope you'll think on all this and realize that this community of caring people that are trying to make a huge difference do not deserve to be bashed and slandered. I'm not sure that you've vetted them properly.

    I must say, these families and children didn't deserve to have their video erased off of this site. They don't deserve to be removed like they don't exist. This was certainly not handled properly, at least not in my opinion.

  •   •   over 11 years ago

    As a mum of a 1-year old baby with PWS who voted and encouraged her friends to vote on this video from Thailand and many other countries (yes, this was a global effort), I am VERY disappointed in what I have discovered today and feel that the PWS community has been cheated.

    To accept this video for the voting procedure and then to erase all mention of it from your website when it obviously won is a huge insult to the people who dedicated their time, effort and resources to create the video to raise the profile of the difficulties of all those coping with the many challenges posed by PWS, and to all those who supported it by voting.

    And they say that developing countries are corrupt ... shame on you.

  •   •   over 11 years ago

    I try not to judge others after being blessed with a little girl with PWS. She has shown me on how to be more tolerant of others and I ask the judges and the other doubters to walk in the footsteps of those with PWS and then say that they are not worthy of representing the fight against obesity and the promotion of healthy living.
    Also I would like America to know that the whole worlds PWS community is following and supporting you.
    Mum to Pws girl age 6. England

  •   •   over 11 years ago

    I am incredibly disappointed and disheartened to read the results of this contest. While the videos were all reviewed prior to being available to vote upon, the One Small Step video has now been removed. One Small Step was 6,000 votes in the lead when the voting ended. How would that not equate to being the popular vote? Was the public's voting a ruse and it was left to the government sponsors to determine who they wanted to win? The submitter of the video and/or the Foundation for Prader-Willi Research has not been contacted with any explanation. We are very disappointed with the results of this scam.

  •   •   over 11 years ago

    Clearly One Small Step was the front runner in the votes at the end of the competition. If the decisions were already made before the contest began then this was definitely a rip off and very unethical. Michele Obama should be made aware of how our organization PWS was treated and invite us to the white house anyway. We contributed to this contest fair and square and if the people that ran it are crooks we should not be punished.

  •   •   over 11 years ago

    Irwin,

    If the PWS video was NOT* a qualifying video then it wouldn't of been ACCEPTED into this challenge and WON, period. How can you argue that we have no case and that we would even look like "fools" when all we did was enter a contest like everyone else. Don't worry "Irwin" when we do bring this to the media and mention your name and how cruel you are to parents and a community of children with special needs....and implying that we "set up polling booths at national meetings and at walks attended by thousands"...hmmm that definitely didn't happen... we'll see what happens when all is said and done. The only word I have that comes to my mind is unethical. Very UNETHICAL.

  •   •   over 11 years ago

    also Irwin...by making such a bold statement as to say we "set up polling booths at national meetings and at walks attended by thousands"...pretty sure your walking the fine lines of SLANDER...please think before you make assumptions and speak.

  •   •   over 11 years ago

    For ALL
    involved with the One Small Step Video being put aside - GO DO THE RIGHT THING!!!!

  •   •   over 11 years ago

    It is absolutely an outrage that this beautiful video did not win, despite clearly having the most votes. I went in every single day along with hundreds of others, to vote for this worthwhile cause. We are owed an explanation as to why this video did not win, AND, why the video is not even visable any longer. What a complete injustice you have done to these individuals, such as my beautiful godchild, who will live everyday struggling to fight obesity.

  •   •   over 11 years ago

    Brandon...per your website, off to the upper right: "Questions about the rules? Add them in the discussions."

    Oh...go ONE SMALL STEP!

  •   •   over 11 years ago

    To Irwin F - I am embarrased for you. Enough said.

  •   •   over 11 years ago

    The "Let's Move!" video challenge turned out to be a farce. The so-called "panel of judges" should be embarrassed that they were judges of such a dishonest contest. They might want to read Rule # 5 of the contest which states: “Submissions will be posted on Communities.Challenge.gov on a rolling basis after being screened by the Sponsor and Administrator for eligibility, accuracy of messaging, and compliance with all Submission requirements described in Section 4.” Since the video was on the above mentioned website, the Sponsor and Administrator obviously determined it fit all criteria. According to Rule # 6, the judges will consist of 5-9 experts and all be Federal employees. It also states that they will be fair and impartial and fully comply with all applicable government ethics requirements for Federal employees. For the One Small Step video not to win the popular vote is appalling and disgusting. That it did not even get one of the 7 Honorable Mention winners is a travesty. All the voters for this video and all the children and adults with PWS were cheated. Shame on you!

  •   •   over 11 years ago

    I am also voicing disappointment with the outcome of this contest~ if there was an issue with the content of the One Small Step video, it should have been addressed at the start of the campaign and not after their video clearly wins. Our friend's daughter is affected by Prader-Willi Syndrome and I voted as often as possible in support of them. Obviously via the decision made and some other comments here, this disease is not well understood by the general population. I can attest that I was not very familiar with it before her diagnosis. For those leaving negative comments about the One Small Step video, please educate yourself on PWS before making assumptions or comments about what you think persons affected by PWS need or go through on a daily basis.

  •   •   over 11 years ago

    To say that I am disappointed in the results of this contest would be an understatement. As a voter and a PWS mom I truly cannot understand the results. I sit here watching my son eat his 300 calorie breakfast after which he will jump on a trampoline, do sit-ups and dance with me, a process that we will repeat throughout the day. He and every other child or adult with PWS will have a similar day filled with low calorie, low fat food intake and excersize to combat obesity, isn't that what this challenge was all about! How can the group with the most votes and the most knowledge as a community about childhood obesity not win? If there were issues with the video then it should have been dealt with prior to voting.

  •   •   over 11 years ago

    Hey Guys - Just wanted to let you know that Brandon (from the Challenge Post company) has just contacted Susan. No additional information was provided, but he has committed to get us more information quickly. We will keep you posted. Thanks again for the support and lets stay positive as we wait for more additional information.

  •   •   over 11 years ago

    To my fellow members of the Global PWS Community first thanks for making us #1 because we are. Second we are activist by nature due to the affliction that our loved ones are saddled with which is not their choice as compared to the vast majority of the obese in this country. Third if we do not get the results that we are due then we need to gather our forces and make this a very public situation and it might be a better way of creating awareness than winning. Just think of contacting Hannity at FOX News and ask him how he would like to discredit this farce in an election year and attach Obama's name to it. Fourth we should organize a protest in front of the White House when they have their awards ceremony and we will get A LOT of media attention which is our primary goal in the first place, raising awareness. Having been a part of the protest against the US war in Vietnam I have experienced first hand what can get done with dedication to the right cause. Let's fight fire with fire because this is an injustice period and our loved ones need us to be the ARMY OF GOOD!

  •   •   over 11 years ago

    IrwinF,
    I've been thinking about what our cause must look like to you as an outsider, and I see where you might think that we are here simply to raise money for research. However, what you might not know is that last year, our cause raised over $750,000. This was before this contest existed, so clearly, we do not *need* this contest to raise research money. I'm sure you didn't know that, so I can see how it might have appeared otherwise to you. Hope that helps clarify things. Our group is passionate because we have fought so hard for our children, a group of people for whom fighting obesity is not an option, not a sudden initiative at the start of a new year, but a way of life and a matter of life and death. What better group to lead the way?

    Thanks for understanding.

  •   •   over 11 years ago

    Just wanted to let everyone know I sent the link to both CNN and FOX News. I am not about to let this go because it is the RIGHT thing to do.

  •   •   over 11 years ago

    Well done!

  •   •   over 11 years ago

    I have already voiced my disappointment on this however after continuing to follow this thread I feel compelled to speak a word of caution...

    Turning this into a political protest against Obama would not be wise because the reality is, he and his wife had nothing to do with the judging. It is the contest and their video submission criteria that is flawed and should be the target of anger if indeed a target is required. While I am not saying that we are not owed an explanation as to why we were disqualified, all that we will achieve if we turn this into a political-media venture is people at large viewing our community as poor losers and having the wrong motives.

    Instead, would it not be wiser to continue raising awareness on our own? Really, win or lose this video contest did just that. Simply by us sharing the link with family and friends and having them share the link, we have raised awareness exponentially. We cannot lose sight of this no matter how angry or disappointed we are. Let's take one small step down the higher road for the sake of our cause and our children.

    Mother of a beautiful 4 year old with PWS

  •   •   over 11 years ago

    Robert,
    I love your passion and dedication to our community. The reason why we are amazing is because we do things with optimism and class. As a mother of a 7 year old with PWS and founder of the One SMALL Step walk, I want this more than anyone. Let's give Challenge Post an opportunity to make this right. Keegan has requested a call with Brandon (which I'm sure he will have the dignity and compassion to return and face any misunderstanding head on). It is in everyone's best interest to correct this mistake and our community will come out on top, I am confident of that. I have devoted my life to this cause and I am so honoured and humbled to be part of this community. Thank you and everyone who voted for their time and energy and I assure you, it was not wasted. We are just getting started. The media is an option but let's forgive what could be a misunderstanding and offer an opportunity to the company to make it right. Michelle Obama is a woman of dignity and class who is diligent with her vision of reducing obesity and a healthier America. She is an intelligent woman who knows first hand how important it is to think outside the box when solving complicated issues and that is what our video offers to obesity. My heart tells me that once she has a better understanding of our cause, she will recognize how similar our visions really are to eliminate obesity. Communication is key and there is nothing that can't be fixed. Compared to the challenges our community faces, this is an easy fix. Unethical decisions are tough and draw negative media attention and this is something our positive community wants to avoid (if possible).

    Irwin,
    I forgive your ignorance. You have no idea what we live and your allegations are simply wrong. We were deemed eligible up until yesterday at 2pm. Any video cannot express what our community lives and breathes in 3 minutes. Our volunteers did the best they could to capture highlights of what Prader-Willi Syndrome is, what we are doing about and more importantly how it connects to the general obesity epidemic. Obesity must be attacked from several different angles. Health and fitness is something we know really well and we have so much to offer the general population. And I WISH we had thousands of people at our conferences and walks. For our rare disorder, we are lucky to get a few hundred people out. Be careful when you are passing judgement about any special needs community. I am so grateful to my 7 year old who has taught me the importance of not passing judgement and for helping me to choose to believe in the good of all people. I can't fault you for not understanding. I forgive your comment and wish you well.

    To all my fellow voters and PWS community,
    Thank from the bottom of my heart, words cannot describe how amazing this experience has been. You all gave me the hope and energy to continue our fight to end the endless hunger. We will never stop fighting for all children with PWS, until the day that Dante tells me he is not hungry and a life of independence is possible. In the meantime, we will continue to help him live his life FULL everyday.

    Sincerely Yours,
    Tanya Johnson
    http://onesmallstep.fpwr.org/dw/walking
    If anyone wants to join me, or our mission to eliminate the challenges of PWS, you know where to find me.

  •   •   over 11 years ago

    I cannot think of anything worse than an organization such as this contest being this unabashedly unethical.

    I can't even describe how ashamed I am of you.

  •   •   over 11 years ago

    Corrupt, corrupt, corrupt.....Why am I not surprised?

  •   •   over 11 years ago

    Wow. Just opened the email saying the results were in. Imagine my surprise when the top vote getter is no where to be found... What's going on here?

Comments are closed.