Posted by Dee_Fla on 1/31/06 3:46pm
Msg #92708

In regards to Message 92355

In regards to Message 92355, incase some missed it or to reply to those who responded and its about 5 pages back and hard to find (LOL):

RE: "reward points to DC/MD has a Voice...its Jerry Lewis."

I don't want this to be a controversy, but I do have to say that many do have valid points, no one is wrong (or right) on all issues. We all do have our own opinions. Although the MDA has JL as their spokesperson, and does do alot for the MDA and we have been blessed with good staff over there, but we have also had pure nightmares with them and poor tackness on a lot of things as well. I'm sure many may also have in other organizations. no the MDA or JL is not perfect, however,t hey still have misled and misguided the sponsors/contributers; and we as the parents had to correct them on this.

I'm not saying that the disease MD is above any other disease, however you hear much more about the other disabling disease then you do with MD. Unfortunately, there are so much in the medical community is very ignorant to this disease and how to properly treat it (including physicians).

Thank you for your suggestions, as we have done such fundraisings. We are now thinking of establishing another special account especially for parents who are struggling financially that needs to be in DC...but PPMD is also right now implenting something else that will make it easier for us to be in touch with our legislators as well, that will also benefit the upcoming conference. They do see the great need and are currenly working on it. I do keep in touch with my congress/legislators not just with the MD funding but other disability issues in the state/country as well. I've had a lot of luck with this too.

I just don't want to make this into a debate or fight or anything negative to get off the issue on hand of the needs. I'm sorry I brought it up and express my feelings. I hope I've not brought any hard feelings or offended anyone in anyway, and if I have, I apologize.

Thank you to those who have morally supported this and for understanding. Thank you to those who have express their true feelings and to those who had very good suggestions, in which most of you had.

Sarah...thank you for sharing about your children and understanding...as a parent we do understand, that no matter what the disability is, we still do a lot of fighting and advocate work for our kids. NO disease or MD is more important then the other... I'm was just saying that many other diseases have LOUDER voices through the media that the MD does not use to voice it more. However, I do agree with you about the "wasted money" that should go towards more of the medical cure than things that ..ok I'm pleading my 5th now! (LOL)...very hot topic!

Safe hugz,
Dee

Reply by SarahBeth_CA on 1/31/06 5:45pm
Msg #92742

Dee, boy have you got it right with the fighting and advocate work our kids. So I understand the passion and the importance of being so focused on the thing that personally affects us. I could be and probably have been just as guilty of possibly offending someone unintentionally by having my focus on my issue. You keep it up. You go and speak to congress. I say Kudos to you for having the resolve to be the one there representing the issue.

I had a thought on the fundraising. Is there a local Kiwanis club that would consider doing a pancake breakfast or pot luck dinner. We made over 600 bucks doing a couple of rumage sales. All items were donated.

Here's my wasted money gripe. We built a rocket that will take 9 years to fly to Pluto and take pictures, but we can't even nail down a cause for Autism let alone a cure. And that's just one of the many disabilities, diseases, or other medical issues that exist which aren't being researched enough. Just how many billions did that rocket cost?

Reply by Dee_Fla on 2/1/06 9:48am
Msg #92917

Bingo!!!!! thank you!!! thank you!!!

And yes I have tried to go to the Knights, the lions, etc...and not one of them even responses. I have talked to some in person and they keep saying they would want to do something and then nothing becomes of it at all. The area I live in...quite rural, sucks when it comes to helping the disable kids. And the only one who does are the Shriners but any funds they raise go back to their own projects. (if that makes any sense) I had tried to do several fundraisings and ask the community to help...even with the marathon, and the only thing that was donated to the marathon from the community was $75 or less I think. It is quite disappointing and its harder in Fla cuz so many have given for the hurrican victims, who did need that help. d