options on fund raising and planning life around for hsct

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options on fund raising and planning life around for hsct

Postby shucks » Sun May 29, 2011 2:00 pm

I am in a holding pattern on getting into a trial while waiting to see if an injectable drug might help, as the thing I need to do to get into it, according to the folks running the trial. I am brain storming on how to raise a minimum of 150k to afford to get in. I came here to see if you guys had any ideas, as I'm going to hit this think as hard as possible. I have done fundraising for several charities, but never anything close to 150-200k. Any ideas from you guys at TIMS on strategies to raise the cash??? For george and anyone else who has done this, how long were you out of work/ unable to work? I have about 2 months of paid leave saved up at work, and I have no belief that it would be any time shorter than 3 or 4 months out of work from what I read. I work with tons of strangers/criminals/ sick people in the courtroom and planning for court, so I would need to do be careful and plan accordingly.

I'm am pretty convinced of the efficacy of this treatment from talking with 3 people other than George who also are glad they had it done. Cash and work will be my biggest two issues as of now, not counting side effects and unforeseen things. I am optimistic that I can do it should I get in. As of now, I am shying away from the overseas treatment, though I would not rule it out completely, as If I do fall into the 5% of folks with major complications, I wouldn't want to risk dying or getting messed up or something so far from family and friends.

Thanks for any advice guys.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

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Re: options on fund raising and planning life around for hsc

Postby georgegoss » Sun May 29, 2011 3:28 pm

shucks wrote:I am in a holding pattern on getting into a trial while waiting to see if an injectable drug might help, as the thing I need to do to get into it, according to the folks running the trial. I am brain storming on how to raise a minimum of 150k to afford to get in. I came here to see if you guys had any ideas, as I'm going to hit this think as hard as possible. I have done fundraising for several charities, but never anything close to 150-200k. Any ideas from you guys at TIMS on strategies to raise the cash??? For george and anyone else who has done this, how long were you out of work/ unable to work? I have about 2 months of paid leave saved up at work, and I have no belief that it would be any time shorter than 3 or 4 months out of work from what I read. I work with tons of strangers/criminals/ sick people in the courtroom and planning for court, so I would need to do be careful and plan accordingly.

I'm am pretty convinced of the efficacy of this treatment from talking with 3 people other than George who also are glad they had it done. Cash and work will be my biggest two issues as of now, not counting side effects and unforeseen things. I am optimistic that I can do it should I get in. As of now, I am shying away from the overseas treatment, though I would not rule it out completely, as If I do fall into the 5% of folks with major complications, I wouldn't want to risk dying or getting messed up or something so far from family and friends.

Thanks for any advice guys.


Hi Shucks,

Not advice, just feedback. . . . I'm glad that you had an opportunity to talk with others that had HSCT as curative treatment for their MS. It's definitely not good to rely on only one source of info and having some diverse input is good.

I would also think that work and funding are top concerns (other than stopping your MS disease) regarding this treatment. I'm sure there are other issues too. If you have a chance to read this whole page there might be a few additional pieces of info that may be of use. . .

http://themscure.blogspot.com/2010/02/l ... s-day.html

Specifically you might want to read this. . .

Autologous Stem Cell/Bone Marrow Transplantation: A Medical & Educational Guide

http://www.bonemarrow.org/downloads/AutologousBook.pdf

As for how long you would be out of work following HSCT. . . . . this is difficult to predict because everyone responds a little differently to the treatment (chemo after-effects that will leave a person tired for several months) in how long it takes to recover. There is no doubt that one's body takes quite a beating from the chemo regimen. I have heard of some people going back to work one month following realease from the hospital. My own opinion is that is optimistic. On average I think most people take about three months following release from the hospital (which itself is a 3-4 week time comittment). But even then you will still feel quite tired (but not sick, thank goodness) as the body takes time to recover from the chemo. The type of work performed probably also plays a major role in when to return to work. Someone doing desk work will be able to return much more quickly as compared to someone that does hard physical labor.

There may also be some difference in recovery time between myeloablative and non-myeloablative treatment regimens. Although I have never heard of anyone studying the topic. For my own personal myeloablative BEAM treatment I went back to the office at four months post-transplant, but didn't feel mostly back to normal until seven months following. But my case is unlikely to translate to anyone else since everyone's case is different. It's just impossible to accurately predict. You are probably tougher than I am and if so, perhaps you would have a more prompt recovery. But predicting it is really just a crap shoot.

As for funding. . . . . I have been closely communicating with a guy fron the East Coat that is planning to go to Heidelberg and have the same procedure I did. He also does not have the cash for the (approximately $70,000) procedure so he is planning on getting a medical loan and then pay it back over time. (He mentioned to me that stopping his disease is so important to him that he would rob a bank if necessary. Luckily I think it won't come to that as he seems to be confident the loan route will work.)

Regarding safety and mortality of the procedure, this was also my #1 concern, closely followed by the effectiveness of the treatment. The risk of having HSCT is not so much of the procedure itself, but where and how the procedure is administered. The procedure in Chicago is very safe, but it is also very safe at Heidelberg University Hospital. I think Heidelberg performs more stem cell transplantaiton procedures as compared to Chicago (about 300 transplants per year) and they have been doing them for a very long time (since the late 1960's). The doctors (including Prof. Anthony Ho that heads the stem cell transplantation department) all told me that they perform the procedure in a manner that ranks amoung the safest in the world with a mortailty around 1%. This definitely rivals the best found in the United States. The one big difference is that Heidelerg performs the treatment for about half the cost compared to US facilities (the primary reason for this is because US healthcare costs are out of control).
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Re: options on fund raising and planning life around for hsc

Postby georgegoss » Sun May 29, 2011 3:44 pm

shucks wrote:I am in a holding pattern on getting into a trial while waiting to see if an injectable drug might help, as the thing I need to do to get into it, according to the folks running the trial. I am brain storming on how to raise a minimum of 150k to afford to get in. I came here to see if you guys had any ideas, as I'm going to hit this think as hard as possible. I have done fundraising for several charities, but never anything close to 150-200k. Any ideas from you guys at TIMS on strategies to raise the cash??? For george and anyone else who has done this, how long were you out of work/ unable to work? I have about 2 months of paid leave saved up at work, and I have no belief that it would be any time shorter than 3 or 4 months out of work from what I read. I work with tons of strangers/criminals/ sick people in the courtroom and planning for court, so I would need to do be careful and plan accordingly.

I'm am pretty convinced of the efficacy of this treatment from talking with 3 people other than George who also are glad they had it done. Cash and work will be my biggest two issues as of now, not counting side effects and unforeseen things. I am optimistic that I can do it should I get in. As of now, I am shying away from the overseas treatment, though I would not rule it out completely, as If I do fall into the 5% of folks with major complications, I wouldn't want to risk dying or getting messed up or something so far from family and friends.

Thanks for any advice guys.


A little more info regarding work from this good-reading document. . . .

Understanding Autologous Transplants: A guide for patients and families

http://www.leukaemia.org.au/fileadmin/d ... plants.pdf

Getting back to work

The decision about when to return to work is a very personal one.
It will depend on how well you are feeling, the type of work you
do and your personal and financial circumstances. Many people
take a few months off and then go back to work on a part-time
basis, increasing their hours as they feel up to it. When to go back
to work is another issue you should discuss with your doctor.
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Postby shucks » Sun May 29, 2011 4:16 pm

So does that mean that you were about 5 months out of work while you were getting the entire thing? That is a long time, but it looks like it was worth it to you.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

Who is John Galt?
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Postby georgegoss » Sun May 29, 2011 4:43 pm

shucks wrote:So does that mean that you were about 5 months out of work while you were getting the entire thing? That is a long time, but it looks like it was worth it to you.


I think five months is about right. But this is just for my own situation. Your's may be quite different.

I was luckly to have an employer very understanding and 100% on boards with what I was doing. If they weren't so accommodating, maybe I would've gotten my ass back to work sooner. But I'm glad that I didn't have to cause I was tired for quite a while.
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Postby shucks » Sun May 29, 2011 5:16 pm

I have a really good relationship with my employer, and I have about 2 months of paid vacation saved up. Maybe I can get some paperwork type work done while i'm out on my time to keep on the clock. I just don't know past that what to do yet, or if i would be able to do said work in the health condition I would be in.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

Who is John Galt?
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Postby shucks » Tue May 31, 2011 6:44 am

Anyone have any further ideas on financing? I am really interested in ideas.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

Who is John Galt?
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shucks
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Posts: 187
Joined: Fri May 06, 2011 3:00 pm

Postby georgegoss » Tue May 31, 2011 8:22 am

shucks wrote:Anyone have any further ideas on financing? I am really interested in ideas.


An article I found. . . .

http://articles.directorym.com/Medical_Loan-a953.html

And don't forget you can deduct 100% from your state/federal income taxes. Even if the procedure is performed overseas.
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