Posted by Dee_Fla on 1/30/06 12:50pm
Msg #92355

reward points for DC

Dear Friends

Advocacy work, including fundraisings for such advocacy work is very important to me and has become a great part of my life since Timothy's diagnosis. IT has been a great honor in many cases in meeting with different advocacy groups, conferences and things that we can do for those who suffer with life-threatening illnesses and disabilities.

When you are fighting for your child's life, at times you make many sacrifices to achieve thost goals, to win the battles he must suffer day in and day out. Advocacy work has become part of my life, especially as Tim's Caregive & his mother.

In mid-February; parents, grandparents and many more will be personally flying and driving to Washington DC to meet with congress on funding for Duchenne Muscular Dystrophy. They are in need of many voices from families all of USA who can stand up and speak the importancy of our family member, not only for proper treatment and care, but also for a cure.

Many families in the MD community is asking me to be there, however, many of us, including myself don't have the transportation funds to get there. I thought I did, but since I can't find anyone to stay with Tim, I will need to take him with me. I know a few places we can stay at without spending money on hotels.

Some have suggested to see if there are anyone in the MD Community, family or friends who may have Reward POINTS from their airlines that may be able to be donated to fly myself (and maybe Timothy) to DC to speak to congress. February 11-14, 2006

Today is our deadline to registered, which I did (attentatively), but I'm asking is there any one out there who have lots of points on their airlines flight point rewards that can donate for this cause?

If you do, please contact me ASAP (863-385-1856). This is very important to us and to the organization we are working so hard with (PPMD www.parentprojectmd.org).

We hope, that even if we go (or can't go) that you will still join us in writing and calling to your local congress/state representatives offices and asking for help in this funding. However, nothing is MORE IMPORTANT then speaking to them in person. Let them hear YOUR voice, after all, its good for them to hear from family and friends as well, not just the parents or the disable person.

Thank you for your support! Give Muscular Dystrophy a Voice!

Dee Bird, CNSA


Our Favorite Community Links:

Read Updates on Timothy & his health status
www.caringbridge.org/fl/timothy

Learn how you can help Tim & his Sparrow designated Account.
www.sparrowclubs.org

Learn more about Muscular dystrophy & support.
http://groups.msn.com/HopeforMD


DMD Advocacy
www.parentprojectmd.org

Reply by Anonymous on 1/30/06 2:16pm
Msg #92400

MD has a Voice, his name is Jerry Lewis NM

Reply by Dee_Fla on 1/30/06 5:33pm
Msg #92439

Re: MD has a Voice, his name is Jerry Lewis

his name is NOT Jerry Lewis!! and Jerry Lewis does NOT give the effected voice message to congress as parents do. There is so much about the MDA and Jerry lewis that many don't know about that once I had a lot of respect for him and now can't stand him. Its about him at the MDA and not about those affected with it. Don't let him or the MDA telethon fool you. Trust me...I know and many of us parents who kids are affected w/ MD can tell you from first hand. They have misguided and mislead many people.

Jerry Lewis does NOT meet with congress on a yearly basis either. Nor does any of his MDA staff (other then one person that I know who is more dedicated!!!! )

MD does NOT have a voice. after all, how often do you really hear about it, when you hear so much about cancer, so much about parkinsons, so much about diabetes, so much about strokes, so much MS (which is NOT the same as MD). You see ads in magazines and newspapers and billboards about them, you see informicials about them on Television and you hear it on the radio. But do you really hear about muscular dystrophy other then the MDA telethon ONCE A YEAR!!! once a year?!

So no...MD does not have the voice as many of the other diseases does. It needs a voice and it is we parents, grandparents and friends and family of those whose family member is affected with it who can voice it.

So I'm sorry to dispute your "subject", but you are wrong, it is NOT Jerry Lewis.

d

Reply by srnotary_CA on 1/30/06 5:39pm
Msg #92441

Re: MD has a Voice, his name is Jerry Lewis

I agree that was totally uncalled for. Parents have to go to congress as well as others in order to get bills passed.

Anonymous GROW UP!!!!

I am sorry I don't have any airline miles for you Dee good luck though.

Reply by Beth/MD on 1/30/06 5:54pm
Msg #92447

Re: MD has a Voice, his name is Jerry Lewis

Gosh, how insensitive and cruel. Anonymous probably kicks puppies, too.

Reply by John_NorCal on 1/30/06 6:04pm
Msg #92454

Re: MD has a Voice, his name is Jerry Lewis

Why do you think they're anonymous, they have no guts!

Reply by Dee_Fla on 1/30/06 6:08pm
Msg #92457

Re: MD has a Voice, his name is Jerry Lewis

thanks srnotary...i got an email from my brother and he said he wants to help out on this...so I'm waiting to see what will happen. (have not got the phone call yet). d

Reply by FlaMac on 1/30/06 6:32pm
Msg #92458

Anon is a sad reflection of some on this site...

wish I could help but I do very little air travel. Did want to suggest to you calling the airline directly. Believe it or not, I have a friend who had a similar situation and the airline gave her a 75% discount similar to emergency funeral fare. Good Luck and may God Bless.

Reply by SarahBeth_CA on 1/30/06 7:30pm
Msg #92462

Re: Anon is a sad reflection of some on this site...

I too think anons remark was idiotic.

But I have to say thank God for Jerry Lewis. As a parent of a developmentally disabled child I can say that I would be thankful if there was a celebrity of such status that would anually go on tv and remind the country that we have a large population of disabled children that need care, services and research funds. Jerry isn't perfect, I'm sure his organization isn't either. But at least he's there one day a year to say "hey, don't forget about these children". That's a heck of alot more exposure than most every other disability gets. It is equally as important to do what Jerry does as it is to get the right people in front congress. You do sound like one of them. Although it does make me want to puke when I think of how congress will listen and the news will cover it when a celebrity speaks to them, but put a parent there and where's the news crews. I really hope that you get the funds needed to go do something that is so vitally important. May God put the right words in your mouth to make a true impact.

Reply by Anonymous on 1/31/06 1:29am
Msg #92516

Re: MD has a Voice, his name is Jerry Lewis

So where would MDA be without the efforts of Jerry Lewis. Where would MDA be without the money raised by that once a year telethon. If you are so against him and what he does then why not raise your voice and say we don't want your money?

My post was not meant to bash your post or anything else, I was just commenting that in my opinion MDA has a Voice.

Those of you making the kick puppies remark well all I can say is Ki$$ My A$$ !

Just out of curiousity but what makes MD more post worthy than say MS, Parkinsons, Aids, Stroke, any of a score of cancers other than it has effected your family personally. What about world hunger and countless other causes?

Maybe you should make a few calls to some Foundations whose sole purpose is to help worthy causes. Maybe you should organize a Chili Supper of something similiar to raise the money needed to send you to DC to speak before Congress....Try calling your Congressman, he or she may be able to assist you.

Best of Luck!

Reply by FlaMac on 1/31/06 7:32am
Msg #92528

Anon, too late to pull your foot out of your mouth...

I'm willing to bet you are a regular on this forum and possibly someone who complains about Anon posters. If you don't have something useful to contribute then don't bother posting a comment at all. Don't you have ANY signings to do?

Reply by Anonymous on 1/31/06 9:11am
Msg #92565

Take what I said any way you want, not my fault if you

choose to read something more into what I said. Your opinion means very little in the big picture so why don't you go out an do one of your $50 signings. :-)

Reply by SarahBeth_CA on 1/31/06 12:23pm
Msg #92635

Are the planets aligned??????????

I have to say that I agree with the first and the second to the last anon postings. Anyone that reads a line like "MD has a voice, it's Jerry Lewis" and construes it to more than just a simple pointing out that there is someone who does speak on behalf of those with MD is reading "way too much" into it. I think it's rediculous to go off on that. However I do also think anons post would have been better if anon would have posted the text of the second to the last post in the original post. I too understand what anon meant and agree that one disability is not more important than another. They are equally important. As a parent of two developmentaly disabled children I would be extremely offended if (A BIG IF) the heart of Dee's second comment was that MD was more important than my childs disability (it really did ride the line, but I understand the passion she has for the issue). Along the same lines I would not think of diminishing her childs disability over mine. There's plenty of other things that our country flat out waste's money on that could go toward finding possible cures for our children. But I wont go there cuz it would be a long, hot discussion.

Reply by Dee_Fla on 1/31/06 3:40pm
Msg #92706

Re: Are the planets aligned??????????

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 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 others 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 Noni Green on 2/1/06 9:59pm
Msg #93180

Re: MD has a Voice, his name is Jerry Lewis

You come across as so ignorant that I am ashamed that I am responding. If you have a cause, post it, name the cause, so I can tell you howe I give my money to MDA!

Ge up from your A$$ and let's see what you do single-handedly for any charity!

Leave the rest of us alone.

Reply by Noni Green on 2/1/06 9:52pm
Msg #93178

Re: MD has a Voice, his name is Jerry Lewis

Most people did not know what MD was and would be much worse off if Jerry Lewis had not made it known. Next to Bob Hope, I don't believe I know of any other celebrity who has done more for a charity than Jerry Lewis, AND I AM SOMEONE WHO KNOWS! You should be ashamed of yourself!

Just because you don't know his schedule and what he does, does not mean that he does not do enough. I don't care how many in your family have the disease; if it weren't for Jerry Lewis, no one would give a damn once a year or at any other time.

You should meet him pucker up, get on your knees and guess what he has you can kiss!

Reply by TitleGalCA on 2/1/06 10:00pm
Msg #93182

Shame on you, Noni

This is a way sensitive topic, with lots of opinions born of pain, dealing with life's difficult issues, childrens pain and politics. It's all there for anyone to read in this thread.

My god, here is an Off Topic discussion about a terrible disease and you have to measure up to the anon who's only existence is made worthwhile by their stupid and gratuitous posts intended to do nothing more than inflame others?

Shame on YOU with such a nasty comment.

Go read Dee's and SarahBeth's posts. Those were the most common sense and realistic in this entire thread. Even if you have life experience with MD, you would think it would have tempered your attitude and your words.

Reply by Noni Green on 2/2/06 4:13am
Msg #93221

Re: Shame on you, TitleGalCA

How dare you presume to tell me how to respond to this topic!

1. How many people in MY family have been affected by this disease?
2. How long have I known Jerry Lewis and can attest to what he has done for my family?
3. How much do you know about his work with MDA for more than 50+ years?
4. How much do you know of Jerry's inspiration to others?
5. How much money has he raised for MDA that made strides in treating the diseases?
6. Who would have paid attention to the disease if not for Jerry and his celebrity friends?

You don't know me, so don't you dare presume to be in a position to tell me how I should respond or where shame belongs. Anyone who can knock a man like Jerry Lewis, whether that person gives a real name or not, who has given so much of his life while suffering through his own bouts of depression, meningitis, back problems, heart problems, and awful reactions to medications, but still comes out all year, not just during the televised telethon, should get on his knees to kiss his ring, a$$, and anything else to thank him for a lifelong commitment to a cause that very few celebrities have today. I have known Jerry Lewis for 41 years, and no one tells him to do this charity, like so many others are told they must do to beef up their celebrity images. Jerry does this out of the goodness and compassion of his heart much the same way that Danny Thomas began St. Jude's Cancer Research Hospital, now his daughter, Marlo Thomas, to continue the good work.

I do not apologize for speaking to someone's ignorance or stupidity under any name he uses. To you I can accurately say that you better know someone before you jump on this with your characterization of others and not knowing what you're talking about. I have every right to take this topic, OT or not, and state it anyway I want.

It would be best for you to leave me alone about this.