PDCD Family retreat at Walt Disney World.
Also I am able to give you the link to the site that Disney has created for this event if that would be helpful "
I asked for the link ot site.... she continued to ask me to call her, I kept refusing and responding asking to see the Disney site I got the following email "
Because this is by invite for families affected by PDCD there is a process that must be followed to get the link to website so that anyone is not just able to get the discounts that have been set up for these families. This is a secure safe support group and we try to keep it that way.
Like I said you are more than welcome to contact me anytime.
In response to why the Dr. Kerr office denied his attendance in such an event "Hello,
I am not sure why you will not contact me directly, but this is something that Dr kerr as been invited to by a group of parents not through Rainbow Babies hospital.
If you would like to discuss this further with me my contact is below and I am more than happy to fill you in on our group. Since you will not do that I will have to assume that you would like to stay anonymous and that is ok as well.
Person SEtting up event
President and CEO
There facebook page for event
Plus their Fund Raising Page http://www.katieharveypdcdfund.myevent.com/
mel780 - DISAGREES
I know Brittany personally, and she has done so much for PDCD. At the time you got your information, the kinks were still being worked out.
As far as Brittany asking for you to contact her, this was for verification that those signing up for the retreat do in fact have PDCD. There have been a few people trying to get discounts by saying that their child is affected without providing any documentation. You CAN NOT access the link to the site without verifying the diagnosis, and anyone who is trying to save a few bucks off the backs of sick children are certainly not welcome at our family retreat.
A few moms are working with Brittany and they have tried contacting those who claim their child is affected and would like to go. Many have yet to respond, which only tells us that they were the ones trying to scam the charity.
All info on the fundraising website is true and accurate, and this 1st ever retreat is shaping up to be one of the most wonderful things that could happen to this disease. I am proud to be a part of it, and proud to call Brittany, Jillian, Kelly, amanda, and all the others rock star mommas my friends!
MelissaC6 - DISAGREES
This person is COMPLETELY incorrect in this post. I am part of one of the families going to the PDCD retreat!! There is a form that needs to be completed and returned to Brittany Harvey to ensure that a family member actually is affected by PDCD. Once it is verified then they are given the website and phone number of Disney. When I called the phone number (which actualy can be seen on the Disney website which pertains to conferences at Disney) and told them which group I was with, the Disney operator KNEW about the PDCD Retreat and I made my reservations thru the group!!!! Due to this disorder many families (including mine) struggle with the cost because insurance companies will not pay for portions of the medical costs. Some families (including mine) placed on Wish Upon A Hero and are completely legit!!! It appears that the person who posted this (without placing a name!!!!, which should be a clue as to this persons desire to mislead others) really did NOT do any research. There is no scam except for some people trying to get discounted rates at Disney on the backs of very ill children and their families. Please feel free to contact Disney and ask about special conferences and then ask about the PDCD Retreat. I wish I knew who wrote this and hope that they see this, If I knew who you were I would be suing you right now for slander and winning!!!
Dmsin2011 - DISAGREES
WOW I am truly sickened by this.First I need to say that I think anonymous is an IGNORANT HUMAN BEING!!! I am a member of the PDCD Group Facts My name is Angie Wagner my Son is Allen he was diagnosed at age four,he is now 17,Our Group is LEGIT,Our Trip is Legit.I will not be going on this trip for health reasons and I WANT TO ADD THAT IT IS BECAUSE OF PEOPLE LIKE ANONYMOUS THAT ALOT OF US HAVE A FEAR OF FUNDRAISING IT IS TRULY FRUSTRATING!!!!MORE FACTS OUR CHILDREN GET PUSHED TO A BACK BURNER BY SOCIETY AND THE MEDICAL COMMUNITY BECAUSE THEIR CONDITION IS AN ORPHAN DISEASE!! THEIR IS NO CURE LET ALONE A TREATMENT THAT IS PROVEN EFFECTIVE!!WE HAVE ANGELS WHO LOST THEIR FIGHT TO PDCD FOR ANYONE TO TRY TO SHATTER THE SUPPORT THAT WE HAVE FOR ONE ANOTHER OR FOR THIS RETREAT INFURIATES ME,HOW DARE YOU BE SO NEGATIVE THIS IS AN OPPORTUNITY FOR SO MANY OF OUR CHILDREN AND PARENTS TO MEET FACE TO FACE AND KNOW THAT THEY ARE NOT ALONE IN DAY TO DAY STRUGGLES.BRITTANY I WANT TO THANK YOU FOR WHAT YOU HAVE WORKED TOWARDS WE PARENTS SUPPORT YOU 100%.I WILL LEAVE YOU WITH THIS BE CAREFUL HOW YOU TREAT OTHERS(I would never wish harm on another person) BUT KARMA SUCKS!!!AND IF YOUR CHILD WAS AFFECTED OR ANYONE ELSE YOU LOVED HAS PDCD, OUR GROUP IS OPEN TO YOU,INFORMATION WOULD BE GIVEN ABOUT TRIP,YOU WERE GIVEN THE CHANCE TO CALL AND GET THE INFO and YOU JUST DIDN'T FOR WHATEVER REASON.AND HOW DID YOU GET A HOLD OF DR KERR"S SCHEDULE???THAT IS SOMETHING I FEEL YOU ARE LYING ABOUT!!!!!