Let's get working on this!!!

[Karen 2112]

Have any of you guys just internalized this? It is so awful, it is crazy we as a forum need to do something more! What can we do to make this an agenda item with top politicians? I sent out approx. 50 letters to US and Canadian officials and recieved 3 letters back. That is not acceptable. We need to do something!! Soon and fast, this is just crazy to me. We are on this forum to try to find answers, the governmnet should put in a little effort!!!!!!!

[patti]

Karen,

With all do respect, what should they do? More research dollars? Honestly, research is controlled entirely by drug companies with a desire only to make money, not really “cure” anything. If they cure it, who will buy the drugs?

I’m sorry, maybe I’m cynical, but it is not the job of a nanny government to take care of every single need people have. I guess I just see lobbying for any kind of cancer research (breast, leukemia, etc) as nothing more then begging nanny to take away a disease it does not have the power to do. I think if private individuals want to donate to the organizations like the MDS or leukemia foundation, then great. Hopefully those dollars are going to research. But realistically, everyone has their hand out these days. They want paid family leave, they want social security so they don’t have to plan for retirement, they want free lunches so they don’t have to be responsible for their kids, they want cancer research so they don’t have to deal with disease. At what point do the tax dollars stop? Would it not be better to give the people more of their money back to do with as they please? Including donate as much as they want to cancer research?

I’m sorry. I just cannot stand the thought of the government getting involved in anymore of anything. The drug companies and medical schools are running the show that way anyway.

Maybe it’s just late, and maybe I’m just too tired from taking care of mom at the moment, but I don’t get it.

Patti

[Jack_dup1]

I have quit posting on the Patti forum, but this one is hard ignore. I will paste my son’s comments, he said it better than I could.

I just checked out Patti’s posting, ouch, I don’t think anybody has ever been that far right in the history of mankind. If Milton Friedman and Jerry Fallwell had an illegitimate love child on steriods – well, that would by Patti. What I can say except, darn, you MDS-suffering folks better start taking some personal responsibility for being sick! You should have thought of what a burden you would be on society BEFORE you decided to let your bone marrow act like some kind of blue-state-handout-wanting-lowlife-freerider….

And yet…there is a sad, twisted consistency in Patti’s approach – I mean, if the government can’t do anything, and the drug companies and “regular” doctors can’t do anything, well, that pretty much leaves Dr. Kung Pow and his herbs ‘o plenty as the only hope we’ve got. One wonders, of course, what Patti would say if the government wanted to sponsor research into homeopathic medicine…For example, what if those socialists at the NHS wanted to give Dr. Kung Pow 50 million bucks to work on his natural remedies? Would Patti still be trying to drag FDR’s bones out of the ground to give him an energetic slap-around from far, far out in right field?
Jack

[Bkwits]

Patti said >>>>they want cancer research so they don’t have to deal with disease. >>>>

Yes that is what I want. It has taken many of my loved ones. My great-grandmother died at 43, her daugther (my grandmother) at 50, her daughter (my aunt at 59), her other two daughters both had cancer and survived (although one lost a leg to cancer). My cousin (from the same line, has it now). So yes, I would like to not have to deal with it. Many men and women are surviving cancer now, whereas years ago it was a death sentence.

It is precisely the government’s job to protect and look out for the health of the people. Don’t forget that we are the government. Polio was an epidemic when I was a child. It has been almost eliminated as a disease, due to research and government mandated immunizations. Tuberculosis was also a dreaded deadly disease, which has been mostly eliminated in our country. The same goes for smallpox. I have suffered from Meniere’s Syndrome, (for 26 years) which has caused me to become nearly deaf. Do I wish the government and drug companies would do more research into the causes and treatments,you bet.

As for private organizations and charities, I do as much as I can. Most people have never heard of MDS, or Meniere’s for that matter. Even some health professionals are not familiar with the names of these diseases. How does one expect the public to be willing to contribute.

If the research and treatment of these diseases is successful, it could benefit society as a whole by returning productive members to it. I was self-employed most of my working life. I know how burdensome taxes can be. I worked as long as I could with my condition (and so did my husband with his illnesses). I loved my work and would be working and paying more income taxes, if there had been a treatment for me before I became deaf. You can label with whatever label you choose because yes, I do believe we are a humane society and have a responsibility for each other.
Respectfully,
Barb

[SandyB]

I am sitting here with so many thoughts and questions running through my mind. (What I have left of one!)

Mike and I both strongly support the idea of government funding for research and development that will lead to a cure for this dreaded disease. We have been working on trying to get some attention for MDS from Congress, and letting people know what an insidious group of diseases these are, since a week after his diagnosis.

We are in the fight for Mike’s life, just the same as most of you are with your loved ones. Our focus has been on trying to do our part, since it keeps us from the thro’s of depression and worry to some extent. I am not saying any of this for self praise, but because we have two sons in their early 30’s and want neither to have to experience what we are.

We received an email a few days ago, as maybe many of you did, about a push to get Congress to set aside more funding for research in blood cancers in this current budget. I posted the message on this website and received only one response. I was amazed, but figured surely others were contacting their Representatives and Senators to help this group.

The bottom line is that Karen is right! No one has a more vested interest in this disease than us.

By reading the posts on this forum, it is evident that there are many intelligent people in our group, who are capable of making a difference here. If Mike and I can be reponsible for getting hundreds of letters to Congress, from relatives, friends and new contacts we make, so can all of you.

I think two of the things that would be best for us all to remember are these: “No-one is as smart as the group of us are.” “There is Power in Numbers.”

We would personally be interested in spear-heading a larger campaign to get the attention for this disease that we all deserve. If anyone else is interested, please go to our website, http://www.FightMDS.com and contact us.

In the meantime, thank each of you for sharing your information on MDS, your well wishes during a hard time, and most of all your prayers.

[californiamom]

SandyB,

I do want you to know that your posts about funding for research in blood cancers did not go in vain. I myself sent the link on to all of my family, friends and co-workers asking them to send it on as well. I’m sorry if I did not respond on the message boards, I just got into a groove and started sending it to everyone I know. Thank you for posting the information and please keep up your hard work it is appreciated.

[SandyB]

californiamom:

No apology necessary. Your actions were far more important.

I am only doing a small part, but I am doing what I can. Thanks, and may we as a group, be successful in all our battles at home and in public.

[Bkwits]

SandyB,
I contacted my Congressman Dennis Hastert. I will ask others to do the same. BTW, any size donation to the Leukemia/Lymphoma Society will and you will receive some beutiful address labels and note paper. Just a thought. Barb

[Zoe]

Sandy,

I didn’t post here, but I also sent out the e-mails to my representatives, and I e-mailed the link to friends and family.

Zoe

[SandyB]

BKWits and Zoe – Thank you both so much for sending your support letter. I have heard here and on other of my posts that there were many sent.

I knew we were a good group! BKW, we must live in about the same area. Dennis Hastart was my representative too, until some re-apportionment.

[Bkwits]

SandyB,
I live in central Kane County, just south of Elburn, and west of Geneva.
Barb

[SandyB]

Barb:

The world sure is small. We live in Sandwich.

Mike is being treated at Delnor/Cancer Center for his Vidaza infusions.

We may pass your house on the way! HaHa.

[chuckk333]

Just because you have not had feedback does not mean that your request has been in vain. Not only did I write the congressman and senator and the head of the committee, I sent a request to actually hundreds of people that are on several lists of which I am a part (even though it broadcast the fact that I am fighting this disease my self) and many of them acted.

By the way, there is a new head of the committee (due to the change of party control in congress)and another round of letters to him would be advised.

[SandyB]

Thanks Chuck, you are right. There is a whole new Health Committee as well as a new Chairman.

I will add a link to the website to the page they are all listed at.

Thanks so much for sending all the support letters. I guess I learned a lesson, that everyone does not respond to a post, but still goes the extra mile.

[Bkwits]

Hey Neighbor Sandy,
I practically lived at Delnor is 2005, especially the last few months. Joe’s hemo/onc was Dr. Chris George. He got Vidaza and tx’s at the outpatient infusion clinic. My son is going to build a house at Lake Holiday. Barb

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