• 90 comments

  •   •   over 11 years ago

    Where's Eric Holder to investigate voter suppression when you really need him?

  •   •   over 11 years ago

    Thankfully, I am aware that a positive resolution is underway regarding this issue, however I think that it is still important to voice my opinion.

    I was extremely disappointed with the results of the contest. In my opinion it is completely deplorable and unethical for this contest not to follow its own rules. The One Small Step video clearly had an overwhelming lead at the end of the voting period; therefore there is absolutely no reason why it should not have been awarded the popular vote as per the explanation in the contest rules:

    "The public will vote on the Submissions on Communities.Challenge.gov between February 11, 2012 at 10:00 a.m. EST and May 11, 2012 at 5:00 p.m. EDT to determine the Popular Choice winner."

    The public voted, and yet their voice was ignored. This alone is inexcusable, however what makes it even worse is that there was no explanation provided, either to the submitter (who I personally know) or to the public whose votes were ignored.

    The speculation was that the video was disqualified, and if this is what happened I still find it extremely disturbing for the following reasons:
    1) As has already been pointed out, per the contest rules eligibility should have already been determined upon submission (“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 posted on the website and voting allowed, the PWS community participated in the contest in good faith believing the rules would be followed, believing our votes would count.
    2) Setting the above aside, if there was some issue or question of eligibility then there was plenty of time within the two months from the contest ending to the announcement of the winners for the judges/officials to contact FPWR to discuss the matter and seek clarification.
    3) Finally, given the huge lead the One Small Step video had it would seem only common courtesy to inform the organization prior to announcing the winners that the video had been disqualified AND providing an explanation.

    The bottom line is that the officials handled this situation extremely poorly and that is a HUGE disappointment to me and the whole PWS community. While I am pleased that a positive resolution is in the works I certainly hope that it includes a public apology, explanation and announcement; just as all supporters received an email announcing the winners, another email should be made to announce the oversight. Anything less would still leave a sour taste in my mouth.

    Julie Casey
    Mom to an 8 year-old with PWS
    FPWR Member
    PWCF Board President

  •   •   over 11 years ago

    Irwin F.

    Some of my fellow parents are far more gracious than I am. I understand your ignorance; PWS is an extremely complicated syndrome with so many far-reaching issues that unless you are “in the trenches” you can’t possibly understand the issue. However, I cannot forgive your attitude and behavior. There’s really no reason for you to stir the pot by posting here. This thread is about the injustice done to the One Small Step entry; the officials did not abide by their own rules (see my post above). This thread is about a small community who pulled together to accomplish a big task and win the popular vote and then not be awarded that without any explanation.

    You are speaking on an issue that you really know nothing about, and it is you who appear foolish, not a community who very much knows precisely how our goals are perfectly aligned with the Let’s Move Campaign. Indeed it is difficult, no impossible to convey the One Small Step mission in a 3 minute video, so again I do understand how you might be confused about everything the PWS community stands for. That doesn’t give you the right to criticize the entry or to make false accusations simply because of your ignorance.

    As Tanya has already pointed out we only wish that we had thousands at our events. A rare disease just can’t attract those numbers, unlike Cal State Northridge which does have thousands of students and alumni and with whom the One Small Step entry was neck and neck with for much of the contest. Did we rally our community? Absolutely! Did we ask our friends and family to vote daily for us? Of course! We got thousands of votes because a small group of people diligently voted daily, pure and simple.

    As has already been pointed out, the fact that the video was, per the contest rules, reviewed for eligibility prior to be posting in the website, this issue of eligibility should be moot. Let me also point out the primary activity of One Small Step is walking, which is the most fundamental physical activity and therefore fits right in with the rules of entry which state “The Video must focus on topics in one or more of the three areas of interest: (1) healthy eating, (2) physical activity, and/or (3) access to healthy, affordable food. Videos that address multiple areas are especially encouraged.” Of course the One Small Step mission is MUCH more than just this, it is indeed about promoting a healthy lifestyle through healthy eating and regular exercise. Numerous parents are successfully battling obesity in their children (who are genetically pre-disposed to be obese and require FAR fewer calories than the average individual); we want to share our success with the world. We want the larger community to be healthier because that will be better for our children, and for all children. If this isn’t alignment with the Let’s Move campaign, I don’t know what is.

    Perhaps one day instead of simply appearing to be sympathetic to our plight you will attend a PWS event. If you contact anyone of us here I’m sure we’d be happy to help you find an event near you, or a family you could meet. Anyone who truly takes the time to understand the complexities of PWS will never look at obesity the same way.

    Julie Casey
    Mom to an 8 year-old with PWS
    FPWR Member
    PWCF Board President - www.pwcf.org

  •   •   over 11 years ago

    You owe the PWS organization an explanation as we had the most votes. It should be written in this blog for everyone to see. We followed your rules.

  •   •   over 11 years ago

    I voted every day in support of dear friends and their son who has PWS. After voting ended I too was excited to see our lead in voting. I am dismayed and disappointed to see that the One Small Step video has disappeared from your website and did not receive a mention after all our hard work. An explanation would be very much appreciated!

  •   •   over 11 years ago

    YOUR VOICE HAS BEEN HEARD!!!

    Hey Guys - Just wanted to let you know that we were recently contacted by Kathleen Merrigan, Deputy Secretary of Agriculture, and we had a very positive discussion. Details are forth coming but our video will be included and we will be going to the White House!

    We continue to see the importance of advocating for our children in a positive manner and coming together as a community.

    While their are still questions, we will be working out further details with the Deputy Secretary and will keep you updated...our White House Adventure continues!!

    Keegan Johnson
    Tanya Johnson
    Susan Hedstrom

  •   •   over 11 years ago

    Will we (the voters) be provided with an explanation?

  •   •   over 11 years ago

    It has been about 2 weeks now since this happened...any idea when the video will be posted again?

  •   •   over 11 years ago

    To the people dealing with this you are dealing with Federal bureaucrats who gave you lip service to shut you up unless I am missing something like they actually received the invitation, and to my knowledge they have not, and our video was re-posted, which it has not. Sitting back and waiting on these people to do the right thing is a waste of time. I got replies that we shouldn't go after anyone like First Lady Obama and that we might appear to be poor losers. First I am not a loser, and second we didn't lose. Inaction will get us nothing, I for one what the Charlotte group who got he FOX affiliate to take up the story to re-contact them and let them know we are being stonewalled.

  •   •   over 11 years ago

    Hi Robert,

    I share your frustration and agree ... we did not lose! I also do not believe in just sitting back and waiting. We fight for our children.

    Since the USDA has been responding to us, I do believe currently our best option is to continue working with them. I have been following up with the deputy secretary for the last week and a half and been on 3 calls with the USDA trying to sort this out. I actually had a call with them today ... your comment was very timely as I was able to read a portion of it to the deputy secretary. The deputy has assured me (again) our video will be re-posted and we will be going to the White House along with the other winners. They have not given me a date for any of this to occur, but they will be making a statement in the near future.

    I remain frustrated with the entire process. I can also assure you that our actions will be guided by a simple principle ... what is in the best interest of our children.

    Keegan Johnson
    ED, FPWR

  •   •   over 11 years ago

    Just saw our video is still not posted. Have we gotten anywhere because we have an opportunity to try and make this a more public cause. I am telling you that the Federal bureaucrats are stalling so we will run out of time and go away and we all worked far too hard to be denied what we earned. Also there is an interesting article in the WED edition of USAToday that I feel we need to respond to as a group about our First Lady if we keep getting stalled. We need to give the Federal bureaucrats a time limit to do the right thing or we take the fight to the media. Don't think these Federal bureaucrats really care about us, they don't and I know because I have been dealing with them for 25 years.

  •   •   over 11 years ago

    I completely agree with you Robert S. I totally agree with being respectful and going about things in a positive way, but, something is just not right. If things were rectified then our video would already be back up. I am starting to lose hope and I don't think it's ok that we just "vanished" o the site and people seem to think by sweeping us under the rug this will all go away. So yes Robert, I second everything you said.

  •   •   over 11 years ago

    The Foundation for Prader-Willi Research continued discussions with the USDA today regarding our PWS video and we are moving forward in a very positive manner. FPWR has seen the progress made by the USDA and it is only minor details that need to be completed before our video is returned to the website. We have received confirmation that representatives from FPWR will be invited to the Let’s Move event and the White House. We appreciate your patience while details are finalized and look forward to the official announcement!

  •   •   over 11 years ago

    Susan H, thanks for the update. I'm sure to most of us who really don't know what is going on, it seems like it is taking a long time. It would seem that putting the video back on the website would be easy but it seems there are details "that need to be completed" before that is possible. Hopefully we the voters will be given an explanation as to why all of this happened.

  •   •   over 11 years ago

    Our White House adventure continues ...

    Our video is now re-posted and the USDA has selected us as a winner under the "Exceptional Achievement" category. The USDA has released an official statement and will be inviting us to the White House. At the end of the day, here's what happened:

    - The Let's Move video challenge was not intended to focus on a single syndrome
    - The USDA acknowledged to me that this rule was not clearly written and they could have identified their concern before the contest started
    - The USDA has apologized for the mistake and are inviting us to the White House as an Exceptional Achievement category because we got the most votes

    The situation has been frustrating, however the USDA has been working with us to resolve the issue. In the end, because of your passion, hard work and voting we have achieved what we set out to accomplish. In addition, this event has significanlty raised the profile of PWS. We have caused a lot of people to realize the passion of the special needs community and how much we can help in the fight against obesity.

    Prader-Willi Syndrome will be going to the White House!

    Now our WHite House adventure really gets started ... who wants to "Take One SMALL Step" with us in Washington?

    Keegan Johnson
    Executive Director, Foundation for Prader-Willi Syndrome

    p.s. As soon as we get a date we'll let you know.
    p.s.s Sign-up at www.fpwr.org/whitehouse for more updates

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