• 90 comments

  •   •   over 11 years ago

    I am incensed that "One Small Step" did not win the popular vote as this video was CLEARLY the popular winner. I smell a rat!

    Betsy N.

  •   •   over 11 years ago

    What a huge disappointment. I logged in and voted everyday in good faith, and I was shocked to get the email with the winners today and not see any mention of the One Small Step video. That video was the clear winner, and we deserve an explanation.

  •   •   over 11 years ago

    I completely agree with all the above comments, and find this contest a pure joke! I don't think the organisers realise the power of social media and how a whole community can also get very upset when misled like PWS just has been.
    The time and efforts wasted on this challenge shows that the organisers have in fact very little respect for communities and their beliefs or concerns.
    We demand an official explanation and a fair response from "Let's move", this is the decent thing to do.

  •   •   over 11 years ago

    This is disgraceful, at the close of voting the One Small Step video was in the lead by more than 6000 votes, and now the video isn't even showing up. I, along with many family and friends voted daily hoping to spread awareness for Prader-Willi Syndrome. This is a slap in the face to the PWS community. I am completely disgusted.
    Mom to a beautiful 3 year old son with PWS

  •   •   over 11 years ago

    Completely outraged by this result. The One Small Step video did meet the eligibility criteria which I've just reviewed one more time.
    This is a missed opportunity for your organisation, the White House and Obama to demonstrate that you truly care about your communities and what people have to say.
    PWS deserved at least to be mentioned and for people beyond the voters to be aware that it exists, that many good persons fight and come together everyday to find solutions and take "One Small Step" at a time to overcome obesity which is one of the critical aspects of Prader Willi Syndrome.
    Obama and Let's move, mistakes happen, it's your chance to make it right in some way. I think all these posts express the same disappointment and should be taken as an opportunity rather than dismissed.
    Up to you to make the RIGHT move...!

  •   •   over 11 years ago

    There are a lot of people that put a lot of time into this, and I hate to see it wasted. Not to mention the fact the missed opportunity to tell America about PWS. If the video wasn't eligible then the submitter should have been notified before 6000+ people voted on it. This issue could be corrected by holding the contest AGAIN. I pray that someone will step forward and do the right thing.

  •   •   over 11 years ago

    We all took our time to vote for the One Small Step video and pushed to make the number one spot. If the video was not adequate according to the contest guidelines, then it should have been brought to attention during the contest. This is disappointing to all of us in the PWS community.

  •   •   over 11 years ago

    This is typical political BS. For whatever reason, this organization has determined that we, the hardworking families of america, don't deserve to be recognized. What a sad statement this is. At least we deserve an explanation. We implore you to contact Susan, the submitter of our video.

  •   •   over 11 years ago

    This is outrageous. And frankly, I think it's about to get ugly.
    Many people have made the point that if the video didn't qualify for some reason, the ethical thing to do would have been to let the submitter know at the outset, to give us an opportunity to submit a different video. The video was pre-approved and accepted in a review on the site though, which by definition, makes it an acceptable entry. Even if that was a mistake, there was ample opportunity to let the submitter know at any point during the voting. To do it now, long after the voting has ended, is completely unethical and is utterly outrageous.
    One thing that the organizers should take into consideration is how this video, of a very rare disease, actually won. It took repeated votes of a relatively small community to win by such a landslide. Many people were dedicated to this cause and made it a priority. The parents of PWS kids showed determination and doggedness to even accomplish this and did not hesitate to spend hours at something they thought was worth it. Getting this many votes for such a relatively unknown disease took a very organized group of people who knew exactly who to talk to to get the votes - the phrase "surgical strike" comes to mind. Given the nature of this group, how dedicated we all are, does anyone really believe that this is just going to go away?
    I'm betting this issue goes viral within the week and the organizers are about to have a PR nightmare on their hands if we aren't declared the official winners asap.

  •   •   over 11 years ago

    I'll echo the same disappointment voiced by my fellow PWS family members. At the very least, an explanation is deserved and should be given. And quickly, lest the injustice of this spread far and wide.

  •   •   over 11 years ago

    To let the One Small Step video go through weeks of supporters encouraging individuals to vote EVERY DAY and not being eligible shows how poorly run and unfair this contest was. The video should never have been accepted from the beginning if it wasn't meeting your criteria. Extremely disappointed with your results after the One Small Step video ended with over 6,000 votes ahead (sounds most popular to me). Further explanation by your contest organizers should be given to the Foundation for Prader-Willi Research. My countless hours of encouraging votes was not totally wasted as more PWS and obesity awareness was raised through your poorly run contest.

  •   •   over 11 years ago

    I am so upset right now. I cannot believe the actions of this "so called organization"! You as a whole are very wrong in your decision to take the one small step video out of the challenge. A lot of people got invloved to make a difference in the lives of children affected by PWS, WHICH, in return helps other children affected by obesity. We have been patiently waiting for the announcement by your organization and Mrs. Obama, shame on you! I will make sure my vote in November counts!!

  •   •   over 11 years ago

    Another one who is disappointed with the results, let alone that I even couldn't find the 'one small step' video amongst the 60 listed. I agree that you should provide us all with a reason for disqualifying it prior to letting us all vote and waste our time. We considered this competition seriously and it's very sad to find out that this wasn't the case.

  •   •   over 11 years ago

    I would like to know what happened.

  •   •   over 11 years ago

    It is outrageous that FPWR's One SMALL Step video did not win the popular vote! It's even more outrageous that their video was removed from the website WITHOUT any explanation! People from all over joined together for the chance to bring awareness of Prader-Willi Syndrome to the national stage. And our community worked overtime, asking family, friends, doctors, nutritionists, therapists, churches, etc, to take time every day to vote. As our numbers began to climb and surpass all other videos, our hope and pride grew.

    But now we're left with no answers. If the moderator felt our video was not appropriate, we should never have been allowed in the contest, let alone encouraged to vote daily.

    If it is true that FPWR is not the winner of the popular vote, I strongly insist you invite members of this organization to the White House anyway. Our impressive dedication to improving the health of those with PWS is worthy of Michelle Obama's time!

  •   •   over 11 years ago

    I would also like to express my sadness of this news. As a mother of a 5 yr old with PWS I hope everyday for a break through and I hope everyday that HUNGER will not rear it's ugly head... but I also have prepared myself for the worse as in the case for this contest. I wonder if anyone took the time to read about PRADER-WILLI SYNDROME! I will scream it because it screams at me everyday!!!!! We have such an amazing group of parents, grandparents, aunts, uncles, siblings, and friends who voted again and again again! The one thng I know about this great FAITHFUL community is that when they do find a cure for the HUNGER and the OBESITY because I know they will... THEY WILL NOT TURN THEIR BACKS ON ANYONE.... THEY WILL CONTINUE TO HELP THOSE WHO HAVE WRONGED THEM by sharing their news and findings and helping all those STRUGGLING with weight who for lack of a better word right now are typical. I look forward to the day when Prader-Willi Syndrome takes the stage and gets the recognition it deserves... with a far bigger audience then we have now!

  •   •   over 11 years ago

    As someone who voted for the One Small Step video I am extremely disappointed to learn that the video did not win despite having received the most votes.

    As was previously commented research about obesity needs to look at a number of factors and PWS can help people with and without the disease to control their eating habits.

    I really hope that the let's move campaign reconsiders and acknowledges their error.

  •   •   over 11 years ago

    Please explain how the video with the most votes does not winner nor receives a mention? We are confused, angry and feel very misled. Who is running this contest? The way this has been handled is unprofessional.

  •   •   over 11 years ago

    This is extremely upsetting. Our community pulled together and voted and WON the vote by THOUSANDS of votes, and NOW you say they didn't count?! This seems either fixed or completely bogus to me. If there were submission issues with the video then it should have been brought to the attention of the submitter PRIOR to being able to vote! Now I feel as though we've all been ripped off.

  •   •   over 11 years ago

    To say I am disappointed is an understatement, but first I would like to thank everyone who voted for our video and who spent the time and energy to get their friends, family and co-workers to vote. I am extremely proud of how our PWS community came together and I am extremely proud of how hard everyone worked for us to receive the most votes. Thank You.

    Second I would like to congratulate the videos that were selected for their hard work and dedication to their cause as well. We are all interested in reducing childhood obesity.

    Finally, to Brandon - Congratulations on what you have been able to create with ChallengePost. Your platform has the ability to spur significant innovation in multiple sectors and I had fun voting during the contest.

    I am sure you can understand the frustration of our community. Our video was accepted, we got the most votes and 6 weeks later our video was removed with no communication. This cannot be the proper process. I am also sure that your company has dealt with this type of situation in the past and the best way forward is to quickly communicate and address the issue directly.

    We are passionate because our children are involved, but we are also a very positive community. I know we can sort this out. I will contact you tomorrow and would appreciate a few minutes of your time on a call to discuss.

    Sincerely,
    Keegan Johnson,
    Executive Director, Foundation for Prader-Willi Research

  •   •   over 11 years ago

    Very well said Keegan, I hope Brandon and the senior management of Let's Move will hear you and acknowledge your comment.

    It is the least they could do after disappointing so many people.
    We look forward to the outcome.

  •   •   over 11 years ago

    Dear ChallengePost Team -

    Wow. Our PWS community was thrilled to enter your video challenge. We felt that we had so much to offer the “Communities on the Move” program. Our loved ones face the challenges of obesity all day, every day, and we understand better than anyone the difficulties of adopting a healthy lifestyle in the presence of a world full of food challenges. We persist every day, advocating for a healthy environment, good food choices and creative ways to make exercise enjoyable. We were thrilled to have the opportunity to share our collective experience on eating right and staying active – if our community can do it, believe me, any community can! We were also excited to show that rare disease communities have important contributions to make to the general population. By advancing the understanding of PWS and sharing how we deal with the issues of insatiable appetite and slow metabolic rate, we saw the possibility of supporting all of those in the typical population who know these struggles.

    We were excited to share a positive message of hope and persistence, and are obviously tremendously disappointed in this outcome - and more specifically in the lack of explanation. I trust you will correct this quickly.

    Please appreciate that we struggle tremendously to find something meaningful and positive in our loved one’s diagnosis. That’s the real challenge. This experience has unfortunately wasted one of our most precious commodities – the positive energy that we have to dig up each day to deal with the immense challenges of PWS. Regardless of how all of this turns out, however, the experience has reminded me how deeply grateful I am for the strength and hope of our community. Many, many thanks to all who supported us, and who continue to support our efforts.

  •   •   over 11 years ago

    The moderators of the "Let's Move" contest do not grasp the magnitude of what they have done today. By dismissing our winning video without offering any explanation, this organization has insulted the entire special-needs community. This time it happens to be Prader Willi Syndrome that is under attack. The next time it will be Duchenne Muscular Dystrophy, or Autism. When we turn this over to the media, it must be made clear that "Let's Move" declared war on every special-needs family accross the country.

  •   •   over 11 years ago

    I feel your pain for having competed in a contest only to find out after the race that you should not have been eligible to compete at the outset. Certainly your children and families, like others with rare genetic diseases, need recognition and help. i can only imagine your daily suffering, Regardless of the magnitude of the suffering of your kids and their families, however, your video shows a community walking to raise funds for research and your explicitly stated motive for entering the contest was to bring your agenda to the White House--to increase awareness about �prader will and to lobby for more funds for research. Now that your agenda has been vetted, you cry foul. It may be possible that research helps those suffering from all sorts of eating disorders but the rules of the video contest clearly stated that the video has to align with one or more of the 3 themes of the let's move campaign. There was nothing in your video that was in alignment. The video did not show children eating healthfully or learning skills to eat healthfully; your video did not show children exercising or the difficulties they face exercising. and your video did not discuss anything about increasing access to healthy food. I believe your group could have made such a video but instead you thought you could get away with a tear jerking video that has nothing to do with Lets move. Too bad you did not question your leader--surely someone in your organization went to the lets move website and figured out what i am writing here. As far as the popular vote, you set up polling booths at national meetings and at walks attended by thousands --no wonder you got thousands of votes. I believe your motivation and advocacy is admirable and I respect your drive; but be honest, read the rules, look at the lets move website and tell the world what your video-- that speaks to the issue of fundraising for a rare genetic disease --has to do with the 3 tenets mentioned above. if you cannot answer that question you will look like fools when you call attention to yourselves in the media.

  •   •   over 11 years ago

    The PWS community has a tremendous amount of insight into what it's like to battle with hunger and the adverse affects of being overweight such as sleep apnea and diabetes. They also have to live in a society where unhealthy options are the norm. Schools reward with candy, ice cream trucks coming down your street, hot dogs and cheeseburgers at the ballpark, popcorn and candy at the movies. All of these are like grenades being thrown at you and your child every single day almost everywhere you go. They fight this battle everyday that they live and they fight it for their life. They don't have the luxury to "fall of the wagon" and get back on it come Monday. I cannot imagine a community better equipped to help solve the overweight problem for "typical people" than the ones that fight this battle with PWS every moment of everyday. I cannot see how this community could be considered not eligible. The magnitude of which they understand this issue goes far beyond what most people can even imagine.

    To Brandon, I say this. On a daily basis myself, my family, my friends, and thousands of others spent the time to register, log in, and cast our vote for the video that we believed could do the most good for our society. For you to say that we, the voters, are not owed an explanation is ludicrous. The One Small Step video clearly received the most votes, by far, and to have it removed from the site was a slap in the face to every man, woman, and child that fight the never ending hunger of this monster everyday. Shame on you and shame on the "powers that be" for trying to erase an entire group of adults and children that are ailed with this disorder. Quite frankly, it's disgraceful and the people that love those very adults and children will not allow them to be erased. They will be heard, they will be seen, and they will be treated with the respect and dignity that they deserve because WE WILL stand up for them and WE WILL NOT back down.

Comments are closed.