I just wanted to say this site is awesome. I'm a 31 woman w/bilateral PFFD and a right above knee prosthesis. I'm married and have 2 daughters. I'm just so glad we have this forum to share stories. I'm really excited to see such a variety in ages and circumstances. Does anyone know of a PFFD conference? How cool would that be????!!!! I just got back from the Amputee Coalition of America conference in Atlanta. There were a lot of people with PFFD there. If there is not a PFFD conference yet, there should be!
A confrence is a super
A confrence is a super idea!! my 5 month old has BPFFD class D! I thought we were so alone until I found this site.
LET'S GET ON IT!
Well, I'm so happy everyone likes the idea. Whatever we need to do, let's do it!!!!! Some other thoughts would be to include medical professionals, like physicians and therapists, that can provide us with medical information. That's how the Amputee Coalition of America was. They had presentations from medical professionals on different prosthetic designs and surgical techniques. We can have different panels so that older PFFD people can provide information to younger people... like a panel discussion on PFFD & pregnancy or PFFD & aging or PFFD & rotationplasty... the possibilities are endless. Maybe we can even get local Shriners Hospitals/Children Hospitals involved. And people can sponsor it too, like prosthetic/orthotic manufacturers, etc...
WE NEED A COUNT
I would like to help get this started. First of all, we need a count of the people who are interested in going to a PFFD conference. An idea for location right now is Tampa, Florida.
Please send me a private message if you are interested. I would need to know the # of people in each party wanting to attend.
Please indicate interest in the poll
The poll is here: http://www.pffd.org/node/452
Reply: Conference
Hi-
I love this suggestion! We had that idea too and hoped with doing People magazine more would be in touch with us and on the website to make this possible. I think this would be so benificial for all ages and we would be able top share stories and learn so much from others!
We attended "National Wheelchair Sports Camp" in Stewartville, MN a couple weeks ago and that was an amazing experience for our daughter Lilly. We did end up meeting a man who also has BPFFD, and never new what it was called that he had. There were all ages there and they did so many amazing things...scooba diving, horseback riding, softball, tennis, water skiing, pontoon riding, archery, hot air balloons, crafts, wall climbing, and much more I am forgetting about. It was started by a gentalman in a wheelchair many years ago. The facility is in the woods off a main highway and has a lodge that is completely handicap accessible including all of the bedrooms. It is an amazing place...great to hold all of us for the FIRST PFFD CONFERENCE AND CAMP
What does everyone think about this idea?
-The Stiernagle's
Let's do it! The idea about
Let's do it! The idea about the camp sounds fantastic. I also have a friend who works for a major hotel chain. If for some reason the camp doesn't work (which again, I think sounds GREAT!) I know that she would be able to cut some wonderful deals for all of us. I have never had an opportunity like this and I am very excited. I'm in!
Sara
Awesome
I think that would be a great idea. My daughter was so overwhelmingly excited to see your daughter in people magazine. We live in vermont and she has never met another person that has pffd. She wanted to mail your daughter a letter to be pen pals!!! It was really cute. I work in a doctors office and neither of the two docs I work for have ever heard of this condition. It blows my mind to see all the people on this site that have or take care of someone who has pffd in some form and now with the article about your daughter and her friend it may get to be more common to find a link.
I think that to get organized we need to designate one person to be in charge of this matter or at least a committee to set up a conference. We should get on this soon, It is august now....lol.
kaylas proud mommy- Tara
Hey there~ I would be very
Hey there~
I would be very interested in organizing a meeting of some sort. I love to plan things!! Just call me Martha Stewart. I have BPFFD and stand at 3'11 and I have a wonderful son who just turned 2 last month. I have a blog on the website if, please feel free to email me anytime.
sara
Re: conference
Sounds like a great idea - I used to work as a consultant with different CVBs (Convention and Visitor's Bureaus) and I'd say once we have an idea of how many people are interested in going to one, the next thing to do is to talk to some CVBs and see what they can offer us in terms of rates and meeting facilities.
I'm in
Whatever help you need, I'm in.
conference
Would definitely be an awesome idea. I also had no idea until last week what my condition was called or that there were so many other people in the world who have the same thing! It is so nice to be on this journey of life knowing that there are others who are "just like me"!
Sheila
I would love to have a PFFD
I would love to have a PFFD conference. It would be a great opportunity for my three year old to meet other people like her as well as I getting to talk to others with this condition.
conference
I would be more than willing to travel for a conference like this. I'm in Austin, TX...