A Gift came in the mail. OMG I guess Hello Kitty isn't mad at me. Thank you Sanrio Co.
Gift from Sanrio Co.
Tomorrow Kelly, Kylie, & Savanna will be flying to LA to do a taping on a day time television show. It will air in Oct., Nov sometime. Wish her lots of luck. This is a chance not only to share her dream but also to bring awareness to childhood cancer and the need for research funding.
Kylie's excited and really wants to see Marilyn Monroe's ghost at the Roosevelt Hotel. lol
Please Help share Kylie's story. Tweet, Share on FB, tell your friends!
What an amazing accomplishment. Over 1000 people have donated on Kylie's gofundme campaign.
We never imagined she would receive such a huge response. We have received hundreds of emails, invites to do interviews, messages of support, encouragement by cancer survivors, and parents with children fighting this terrible disease.
Add to that offers to help like GoHooper.com who redesigned a website for Kylie.
Kylie has been invited to tell her story on a nationally televised talk show and will be flying to the studio on August 27th. Because of an agreement we cannot say what talk show it is until after the broadcast.
Kylie is now in talks with a medical device company called Aesynt. The company has expressed it's interest in Kylie's idea and would like to assist her in making it reality. The company has a staff of designers, engineers, and marketing staff who could help Kylie through the hurdles we expect to encounter.
The money Kylie has raised will go directly to designing and manufacturing a working prototype. We hope to design girl and boy prototypes. The design process will take some time and it may take numerous prototypes to perfect the idea and create a functional and marketable product. All donations will be directed towards the process of designing and producing a working product.
Please realize all this has come with an enormous amount of work by our whole family and others who have offered their help. Kylie is only 11 years old and we still want her to be a kid.
We will continue to post updates as we progress in the process. Please continue to post, share, and tweet this story. The more people who see it the closer it becomes reality.
Thank You so much for supporting our little girl!
Kylie's Ice Bucket Challenge to Ellen Degeneres
Ellen Degeneres Ice Bucket Challenge
Some disturbing facts about childhood cancer.
AMERICAN CANCER SOCIETY:
In 2010 it directed $0.01 (a penny) to childhood cancer research for every dollar of public support.
NATIONAL CANCER INSTITUTE:
Where the government decides how our tax dollars are allocated.
Over the past five years, it has only directed between 3.6 and 4.0% of its total budget, an average of $176 million/year, to pediatric cancer. Why so little?
Ask them here: A petition set up a few months ago by Courage For Kylie asking them to increase funding.
LEUKEMIA & LYMPHOMA SOCIETY:
directed $0.02 to childhood cancer research for every dollar of public support.
Many childhood cancers are treated with Chemo drugs and protocols that are 40+ years old.
If you are considering donating time or money to support childhood cancer research please consider any of the following organizations where your money goes where it's supposed to.
Alex's Lemonade Stand
Cookies for Kids Cancer
This update is for Kylie's supporters who donated, tweeted, and shared to help make this happen.
Kylie is in talks with a major company who would like to offer their assistance in whatever capacity is needed to get this product out to market. Before contacting Kylie, this company has been talking about the concept and even had company head meetings. The company has over 80 engineers, deisgners, marketers, and a patent & legal team. Crazy right?
Also she received a call from a major day time talk show. Not Ellen :( if there was ever a time that Kylie could need to get Ellen's attention (or the producers) it would be now. The talk show is requesting a exclusivity agreement that no other talk show air her idea until after November.
Kylie has also had Skype interviews with BBC World News and some magazines. She's continuing to add more interviews with other media outlets. This Friday, the 15th she will join Tamron's Hall on MSNBC.
Kylie has already accomplished a huge feat. She has brought huge attention to childhood cancer and one small aspect of what it's like to endure having cancer as a child..
We couldn't be more proud of her. Hopefully we can continue the success of getting this idea out there and soon making it a reality.
Kelly & Mike Simonds (Mom & dad)
Thank you everyone around the country for your support! I love the comments!
Thank you for supporting me!
We received an email back from a big IV pump company. Basically just a notice that our email has been forwarded to the R&D dept for consideration.
We got a call from MSNBC and they will be featuring Kylie in a special segment in a series with Tamron Hall on August 18th.
Everyone we are raising the goal. We were advised to do so, so that we can create a fund to immediatly be able to start donating a portion of the begining production. Also to help in production costs. So please keep sharing !! Thanks for everyones support so far. We are well on our way to getting these made.
All donations in excess of my goal will go towards the manufacturing of the FIRST usable IV backpacks. EVERY PENNY!
I am so grateful for the support I have received to reach my goal to design the first prototype. I still have a long way to go but I am well underway. I received some generous donations of $500 and $1000. I will be donating the first working Ipacks in the name of those donors to St. Jude! Stay tuned, this is far from over.
The idea has reached all over the US from LA, to TX, WI, TN, and it's still on Yahoo!!
Holy cheese nuggets, it has been crazy today. We did not expect it to blow up overnight. So it looks like Kylie's doing this. She's tired.
She has been working on designs for the iv bag holders. We'll post some sketches we did.
Kylie had a skype interview with inspiredinsider.com. About 10 news reporters have contacted her today, some national. We have a lead on a contact high up at an iv pump company.
We've received so many comments by so many people either cancer survivors who have had treatments or a friend or family member that has had to deal with IV poles.
On Yahoo there's 170+ comments and this funny comment.
cheri • 7 hours ago
I just donated. It was very easy, and I don't really need to buy chocolate for a little while, anyway.
We cannot say thank you enough to everyone for their support. Hopefully we will see these in hospitals sooner rather than later. Kylie has so many great ideas and she's on a mission.
Thank you to everyone who has shared and donated and tweeted. Jenny Mcarthy just donated woohoo. Amazing how We are getting this out there. Please keep sharing tweeting and donating!!!
Thank you everyone for your support.
FACT: 99% of people who visit will not donate and most donations will be from people I know.(it's true)
The minimum donation allowed by gofundme is $5. But every $5 counts.
So please consider a donation and be a part of something great. Kid's with cancer deserve every little tool that makes life easier for them.
Please share DONATE and retweet. Children need to be able to get out of hospitals and back to having fun. This backpack will help give that to them. No more IV poles and scary machines!!
We are looking at some IV machines first step to making this happen. SHARE SHARE AND SHARE again
Please donate any amount you can!!!!!! If a man can raise over $35,000 to make potato salad (ridiculous) then we can make this happen!!!!
What a great start thank you everyone. Keep sharing lets get the word out !!
Hi everyone we are starting a new campaign to get Kylies IV Backpack made. Please help her reach her goal to get these in hospitals across the country!!
Thank you msg from Kylie.
All donations in excess of my goal will go towards the manufacturing of the FIRST usable IV backpacks. EVERY PENNY!
Kylie NEEDS funding to create a WORKING Prototype!
Kylie is 11 yrs old and a cancer survivor. She designed an I.V. Backpack for children on chemotherapy, receiving transfusions, or other medical reasons.
Contact #: 203-745-9946
FaceBook: Courage For Kylie
PO BOX 493
170 Water St
Look who has donated to my prototype! Yes, that is THE Jenny McCarthy
This year Kylie was challenged with coming up with an invention through her school and the CT Invention Convention. Kylie immediately knew what she wanted to invent. A backpack that could allow children some mobility while receiving I.V. treatments or infusions.
Kylie's backpack couldn't be just any backpack. Because of the fasionista that she is, these would have to be colorful, gender specific, and awesome. She went to work and with the help from her parents designed a backpack.UCONN iNVENTION CONVENTiON
Kylie's invention was chosen by her middle school teachers, among others, to attend the UCONN Invention Convention where over 700 inventions were displayed and many selected for awards and recognition.
Amazingly, Kylie's invention received four awards including the "Patent Award", the highest award at the convention. The Patent Award has allowed Kylie's invention to be submitted to the US Patent & Trademark Office with the sponsor covering all costs. The lawyers have submitted the provisional patent application.
Kylie at the UCONN Invention Convention!
The design incorporated an I.V. pole with a drip bag protection cage. Kids want to move around and we can't risk the Medicine bags getting punctured or compressed. This cage is customizable with different shapes, like hearts, peace signs, etc. This also makes treatment less scary like current I.V. poles which are very intimidating to young children. The protection cage is also removable and can be replaced with a child's choice of design.
If they receive two different medicines or a transfusion and medicine they can add a second cage.
The backpack also has the I.V. controller built into the bag to control the flow rate. It is powered by battery which most I.V. machines on a pole are also battery operated.
GOAL OF THIS CAMPAIGN:
Raise funds to build a prototype. With help from her father, Kylie is now doing R&D to make the prototype. She has found numerous infusion pumps that will suit this idea but the cost for them is in the thousands of dollar range. Additionally, the backpack will need to be designed to support both the IV infusion pump and the carry rod.
LONG TERM GOAL: updated 08/08/14
Create a truely working prototype. Then market the first complete prototype through media outlets to slolicit interest.
Begin production of a boy and girl line of the backpack. Incorporate animal features into the design to make them fun for young children.
Begin researching designs for a backpack line for teens/young adults.
Kylie is determined to make this a reality and see the I.V. backpack in children's hospitals throughout the U.S., maybe throughout the world. Unfortunately, it requires an enormous amount of money to make a prototype of this backpack. The controller will need to be customized to be mobile and also small enough to fit in a backpack. So Kylie needs your help to make this a reality.
Please help Kylie reach her goal. You can learn more about Kylie on Facebook if you search for "Courage For Kylie", her facebook page for support while she was receiving treatment.
This is Brooke from Brooke's Blossems. With a backpack she wouldn't need an I.V. pole to visit build a bear.
This is Kylie during treatment. Once again an ugly I.V. pole.
For anyone interested, this is her website we set up for her while she was receiving treatment for support. A journal of her journey can be found at the link to her Caring Page.
Current Media Coverage:
Inspired Insider Skype interview
And a big thank you to www.GoHooper.com
who has donated their services to redesign www.CourageByKylie.com
Yes, we read and reply to all the comments left by those who donate. These are only a small selected group.
We've learned a lot from reading your comments.
1. Their are way too many children being diagnosed with cancer. The occurance of cancer in children has increased steadily for the past 30 yrs.
2. You guys really need to stop goofing off at work.
3. These backpacks ARE needed!
Adult patients would benefit from them.