Take One SMALL Step!!
WINNER: Exceptional Achievement
Prader-Willi Syndrome is one of the most common genetic causes of obesity. People living with Prader-Willi Syndrome always feel hungry and lack energy. People with PWS don't have a choice, they need to stay fit and eat healthy to survive. So, the PWS Community comes together and takes one small step to fight obesity because they choose to believe!
176 comments
perla mondriguez • about 14 years ago
Please vote to fund research for PWS. It's a syndrome that affects our loved ones 24 hours a day and 7 days a week. How wonderful would it be if our loved ones could be at peace, even for part of the day and not have to worry about what or when they will eat next.
Anne Vandemoortel • about 14 years ago
Just for inspiration for all of you with little ones, take a look at one of my photo albums. My daughter Katie (26 y/o this April 26th) and her two friends (identical twins) have PWS and you will be happy to see them as pageant participants having a wonderful time.
I am voting for the eradication of PWS hunger and have full faith that the solution is in the near future. How exciting it would be to be on a research team discovering what we all pray for.
https://www.facebook.com/media/set/?set=a.74611300692.155077.552540692&type=3&l=5289e4418e
Jen Welch • about 14 years ago
My Precious Little EllyAnnah is Now 20 Months Old and I too did not know anything about PWS and Never heard of it until she was diagnosed at 1 1/2 weeks of age!! Lil Miss Elly was born premature @32 weeks July 25th 2010 she weighed 3lbs 12oz when she was born! Elly spent her first 2 1/2 months of life in NICU came home End of Sept 2010, Elly was home for a short 2 months before she was rushed back by ambulance Dec7th 2010 to the childrens hospital with Respritory issues Elly came home from that stay on Dec18th 2010.. Yay is what ur thinking. She was home from Christmas only to be rushed back by Ambulance Dec 30th 2010 to the childrens hospital PICU for respritory issueas again, on Jan 5th2011 Elly had Surgery to have a Trach placed She also has a feeding tube, She remained in the PICU from Dec 30th 2010 to March 3rd 2011 and she has been back for weeks on and off here and there since then! She was there march 6th 2012 to march 10th 2012 for pnumonia after a muscle biopsy, and then 2 weeks later she was rushed back priority one on 3 L of oxygen and being bagged in the ambulance come to find out My lil girl had MRSA on her lungs and infection in her blood! she was there for bout a week then!! Please let get our Loved ones at peace like others are saying!! She is a STRONG FIGHTER! Makes others count their blessings I been told!! Thank YOu all for reading this here is also my link to facebook!!! https://www.facebook.com/PWSMomma
susan aiello • about 14 years ago
Please help.My 6 year od granson has this,and we really need some kind of drug and other research done about this disease to help curb his appatite!
Donna Miller • about 14 years ago
When our brother Scott was born in 1954 no one knew what was wrong with him. There was no early intervention then. He was 23 years old when our mother read an article in Good Housekeeping magazine which described Scott to a "T". It was then that we knew Scott had Prader-Willi Syndrome. By the time he was 23, however, the damage was done. He is mentally challenged, diabetic and has stage 4 heart disease. Although the food was always kept under lock and key Scott always found a way to get food. He ate garbage, he ate rotten food, he stole food, he even followed the Milkman and guzzled down the neighbors' milk at the first opportunity. Scott is very cunning. When he became upset, as PWS kids often do, he ran away and exhibited "food seeking behavior". One of his episodes found him sleeping on a park bench in Central Park where his pants pocket was slit and his wallet was stolen. Luckily our father was with the NYPD so the police officers in Manhattan were able to find Dad at his station on Staten Island. There's no end to what PWS kids will do to find food. They put themselves and others in danger and they can permanently damage their health. Early intervention can save lives and provide a better quality of life for PWS sufferers and their families. We know, we've been there.
Rachel Fernandez Hansen • about 14 years ago
I vote for FPWR to win this contest everyday, I vote for my son Pablo, age 4, born with Prader-Willi Syndrome. I vote for every person out there with PWS. The PWS community has so much to offer the greater population in regards to fighting obesity. Eating healthy and exercising is not an option for our kids, it's a matter of life and death. Please vote, vote everyday, help us raise awareness. I want to hear Michelle Obama talk about PWS, I want the world to listen, I want to find a cure. Walk with us on this journey, vote with us and take One Small Step.
Richard Baehr • about 14 years ago
In 1 week our son Raymond will under major surgery for his scoliosis at Shriners hospital in Philadelphia, He will be getting titanium growing rods surgically implanted on his spinal cord. As well as your prayers, I I'm asking you all to please click on this link and vote, vote, vote, you will have to sign up but it will only take 1 minute. It is to get Prader Willi syndrome to the white house for awareness. I know I can get 100 votes easy and we are currently in 2nd place only trailing by about 100 votes please help us find a cure for Our little Raymond and the entire PWS community. Thank you very much
Click on VOTE and then sign up...
http://communities.challenge.gov/submissions/6800-take-one-small-step
Take One SMALL Step!! | Communities on the Move Video Challenge
communities.challenge.gov
Prader-Willi Syndrome is one of the most common genetic causes of obesity. People living with Prader-Willi Syndrome always feel hungry and lack energy. People with PWS don't have a choice, they need to stay fit and eat healthy to survive. So, the PWS Community comes together and takes one small
joe klar • about 14 years ago
Ich wünsche viel Erfolg für diese Challenge.
Hab alle meine Freundinnen organisiert zum Voten
Viel Glück Siena!
Vielen Dank für alle, die hier für dieses Video voten
Joe
Stephanie Iverson • about 14 years ago
My brother is known as Patient #1 at the UW in Seattle Washington. He was the first patient diagnosed with PWS, in Washington State. My brother would be 45 years old this year; sadly we lost him right after he turned 40 years old. I wish there were all the support groups and such when I was growing up, there was nothing and that was hard. My brother taught me a lot, as did my parents. Back then most kids with PWS were put right into group homes. My brother lived with us until he was around 36 years old, then he wanted to be on his own, so he did go to a group home. But he was home every weekend. I really admire my parents for all they did with my brother. And I admire all the parents out there who are there now.
Keep up the good work!
Vickie Sisco Templeton • about 14 years ago
Our son, Tyler, is now 22. At birth, he faced many challenges...failure to thrive, very low muscle tone, feeding tubes...but then about the age of 2, he started walking some and wanted to eat all of the time. As small as he had always been, we welcomed this and fed him whatever he wanted when he wanted. By the age of 3, his weight started becoming the issue. He was diagnosed at the age of 5 and we have learned all we could since then to help him have a long, healthy life. He exercises every day and is on a strict calorie count. We have to make substitutions at birthday parties, Halloween, Easter, all holidays that involve food (and being from the South, ALL holidays involve food). We do this because we love him and want him to live and prosper. Please vote for this...for Tyler...for all of our PWS kids!!
Jerry Kowal • about 14 years ago
This is the ONLY disorder known to man that's proven to have a genetic link to obesity. If we are really serious about tackling the obesity epidemic in this country, it seems to me that understanding that problem at the genetic level first is a no-brainer. Curing or even finding a reasonable treatment for PWS would have so many ancillary benefits for other obese people, I urge EVERYONE looking for a solution to the obesity epidemic to vote for this video, and help us finally eradicate something that decades of exercise trends, faddish diets etc., haven't even touched.
david conway • about 14 years ago
We are close to taking over first place! I have been emailing a number of advocates (state and national) to post the link on their website or blog. Hopefully they do it and this spreads the word more.
I encourage you to do the same. It can snowball as more people become aware of the challenge and vote for PWS!
zoe osborne • about 14 years ago
Our beautiful baby Bella was born 14 weeks ago today- we love you so much, you are our special gift. We are voting for you and every person with PWS.
Aga Biały • about 14 years ago
W Polsce jest około 120 osób z PWS. Łączymy się z rodzinami z USA i oddajemy swoje głosy.
Agnieszka z Karolkiem
Darline Jaco • about 14 years ago
I Pray nightly for a cure.My grandson Little Mikie was born and diagnosed with prader-Willi when he was 2 weeks old.We have overcame many obstacles in the four years he has been with us.Multiple doctors appoinments and many surgries behind us .He is a fighter he has to fight everyday just to survive.Our babies always feel hungry ,they don't burn calories as we do so they must be on an very low calorie diet.Imagine the hungriest you have evr been in your life and then multiply that by ten that;s how our babies feel at all times.Sometime i just watch my little Mikie and cry he is a very happy little boy but it breaks my heart when we have to hide food and he keeps saying he is hungry.These children try so hard to accomplish things that a child who has no disabilities zoom through. Please vote and HELP FIND A CURE FOR PWS.
Colleen Mendoza • about 14 years ago
My son Connor was born in Aug of 2009 and was diagnosed with Prader-Willi Syndrome when he was 9 days old. He has come a long way in these past 2.5 years but we still battle PWS on a daily basis. Please continue to vote daily to help find a cure for these beautiful children and adults.
carol braunschweiger • about 14 years ago
Please vote to support this wonderful video. Hopefully many people who see it will help identify with these children and adults who have to have food locked away to keep them alive and as healthy as they can be while being hungry all the time. Our son was not given a correct diagnosis until age 10. Many babies are now diagnosed shortly after birth giving them a head start on staying within a healthy weight limit. Our son will be 37 years old in May. He has had to overcome a great deal of hardship because of this syndrome and he keeps trying everyday one step at a time.
Crystal Brown • about 14 years ago
This goes out to a special little guy living everyday with pws, you are a very strong young man, with a huge heart. Keep up the great work your doing, (and. Mom you doing a great job, keep up the great work your doing, and not just for him but for all the little ones that suffer from pws.)
Christal Watts • about 14 years ago
My younger brother has PWS and he has been able to live independently for over a decade with some help. My younger sister comes over daily to put out his breakfast and morning snack and he has home health workers who come throughout the day so that he does not have to give up his independence. Those who have children and grandchildren living with this disability need not give up hope that their kids can live long, productive lives.
My parents have always advocated for my younger brother. They have known when to push on things such as him living independently and have recognized his limitations. Too often, parents are told that their child with PWS will never be able to live independently and will most likely have to live in a group home or at home. This does not have to be the case.
Amanda Garcia • about 14 years ago
I am the proud big sister of a beautiful young woman who was diagnosed with PWS. I have been through it all with my sister, and am so pleased to see people fighting to create a healthy and happy quality of life for all those with PWS. It is a long journey, but this is a huge help for everyone helping our loved ones.
Daniel Reyes • about 14 years ago
God bless your families and I hope your video wins. Dios bendiga sus familias espero que ganen.
Sharon Lauzon • about 14 years ago
I will try to voat every day for you Dante!!
Matt Simms • about 14 years ago
My 2.5 year old daughter Madelynn was diagnosed with PWS about a month after she was born. We count her calories for every meal. Her low muscle tone makes her gain weight on a diet with which typical kids would lose weight. We need to work hard with our kids so that they won't become morbidly obese. Their lives depend on it. I am voting for Madelynn, and all the other families and individuals dealing with this syndrome. We are one united community, taking OneSmallStep at a time...
Jessica Howard • about 14 years ago
Our community of Prader-Willi Syndrome (PWS) families is the healthiest group around!! Most of us connect virtually, but I have never felt a stronger sense of community than this group. We cheer each other on when a child learns to ride a bike or swims a full lap across the pool. We share creative ideas on how to celebrate holidays in healthier ways. PWS parents require schools to use fun rewards like stickers for our kids - never food. Despite alarming stats about childhood obesity, it seems many in the general public have the "it won't happen to us" mindset. With a diagnosis of PWS, you KNOW obesity will happen without a lot of hard work to prevent it. The One SMALL Step walks represent the healthy way we live and we hope it inspires others to do the same!
Keegan Johnson • about 14 years ago
Well said Jessica. Well said.