Old 07-24-2011, 08:39 AM #1
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Lightbulb fundraiser needs help

My husband and I will be going to India for stem cell therapy. we leave next week. as many of you have probably found, waiting for the US to get caught up and help us is just taking to long. We have 2 children Jason wants to see grow up, walk our daughter down the aisle, give our son parenting advice, etc,. We are hoping to learn from this and hope it has some effect. We have spoken with others who have ALS and have regained some function.

My mother has organized a fundraiser for this week..July 27. Its a raffle with many prizes to win. It will be held near Allentown, PA.

Please help us get to our goal so we can learn and help others. Call Dawn (my mother) at 610-703-5000.

Thank you for your help!
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Old 07-24-2011, 12:21 PM #2
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Default Re: fundraiser needs help

Hate to rain on your parade as you probably have your mind made up but stem cell treatments don't work. It may work someday but not yet. Spending your money in a third world country on unproven treatments (no medical journal proof of trials) is just giving you false hope. I am sorry you are being taken advantage of.

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Old 07-24-2011, 01:45 PM #3
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Default Re: fundraiser needs help

Hope you read these before you put down your travel deposits.
Attached Files
File Type: pdf APatientPathThroughtheMaze.pdf (2.96 MB, 408 views)
File Type: pdf nutech.pdf (78.6 KB, 334 views)
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Old 07-24-2011, 10:16 PM #4
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Default Re: fundraiser needs help

It is not a question of the US getting caught up, it is is more a question of other countries, like India, not having safeguards and controls to prevent unscrupulous health practitioners from victimizing vulnerable persons by subjecting them to unproven and dangerous treatments.

These clinics actually have no idea if the stem cell treatments are helpful or harmful because there is zero follow up.

It is really heartbreaking to read about PALS scraping their pennies together to travel to these shady clinics, undergo these treatments and then experience no benefits.

Sorry that we had to burst your bubble - but we look out for each other around here. I have a 3 year old daughter and I can't bear the thought of not being there to watch over her and share in her life. So I understand your situation.

Check out these threads also:

http://www.alsforums.com/forum/gener...ells-help.html

http://www.alsforums.com/forum/als-r...treatment.html

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Old 07-25-2011, 07:52 AM #5
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Default Re: fundraiser needs help

I am so sorry, I thought I was asking for HELP. Not asking for "Raining" on my parade.

All these things you say I know. I also know that there are no better ideas out there. It's do nothing, or try something! I know what the literature says, and I also know personnally someone with ALS who has been there and has had success- strenght regaining, slower progression, etc. So unless you can provide me with someone who has been there, done that, please keep your negative thoughts to yourself. Hope is not a bad thing. Actually it's all we have.

To those of you who are being hopeful and helping us with our plight, THANK YOU! Nothing can be learned without trying.
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Old 07-25-2011, 09:13 AM #6
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Default Re: fundraiser needs help

I've "been there done that" we went to Germany for Stem Cell treatment just a few months into my mom's symptom onset. It did nothing to help her and the clinic was soon after closed down by the government. I understand your frustration and feelings of hopelessness. Have you been able to for sure verify these people have regained functionality and was it really for ALS?

I am convinced these treatments don't work but can't begrudge you for trying since we did the same.

I can tell you with 100% certainty it did not work for us.
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Old 07-25-2011, 11:28 AM #7
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Default Re: fundraiser needs help

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I am so sorry, I thought I was asking for HELP. Not asking for "Raining" on my parade.

All these things you say I know. I also know that there are no better ideas out there. It's do nothing, or try something! I know what the literature says, and I also know personnally someone with ALS who has been there and has had success- strenght regaining, slower progression, etc. So unless you can provide me with someone who has been there, done that, please keep your negative thoughts to yourself. Hope is not a bad thing. Actually it's all we have.

To those of you who are being hopeful and helping us with our plight, THANK YOU! Nothing can be learned without trying.
If you're definition of help is telling you only what you want to hear and sitting back while your husband undergoes a treatment that has never been scientifically proven to make any difference and actually may endanger his life - I'm sorry but you won't find that kind of help on this forum.

I've been around for a while and have seen your story over and over and over over and over again. There is nothing new about these treatments - I've been hearing about them since I was diagnosed in 2005. Oh sure participants sometime claim that they perceive some improvement - but this perceived improvement quickly vanishes and within a couple months they are back to where they were - or worse.

If it actually worked we would all hear about - it would be in the papers - it would not be just the testimony of some guy experiencing the equivalent of placebo effect.

Plus - you are asking others to fund this fool's errand with their hard earned money? I don't think so.

It has been tried - it doesn't work.

We just can't sit idly by and let your family be subjected to this anymore than we could sit by and watch someone about to get hit by a car and not try and warn them.

We are all in the same boat as you - we are all dying for a cure. We care for you - the clinic in India only cares about your money.
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Old 07-25-2011, 01:29 PM #8
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Default Re: fundraiser needs help

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I am so sorry, I thought I was asking for HELP. Not asking for "Raining" on my parade.

All these things you say I know. I also know that there are no better ideas out there. It's do nothing, or try something! I know what the literature says, and I also know personnally someone with ALS who has been there and has had success- strenght regaining, slower progression, etc. So unless you can provide me with someone who has been there, done that, please keep your negative thoughts to yourself. Hope is not a bad thing. Actually it's all we have.

To those of you who are being hopeful and helping us with our plight, THANK YOU! Nothing can be learned without trying.
Tell you what -- don't ask me for financial assistance in your foolish endeavor and you won't have to watch me rain on your parade. Do it all by yourself instead of begging for other people's money to fund your silly ideas.

Deal?
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Old 07-25-2011, 06:37 PM #9
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Default Re: fundraiser needs help

First off, I would never ask my fellow families dealing with ALS to donate to me for ANYTHING! Most can barely get buy, as it is.

As for stem cells, my husband nearly got sucked into that right after he was diagnosed. The guys doing the sucking ended up on 20/20 as fraudsters! Thankfully I dug deep into the people providing this "treatment" and found dubious credentials for the kind of therapy they offered.

You really need to research this idea further. You must not have checked out the links provided to you.

They are conducting stem cell trials in Atlanta at Emory and I believe another research hospital up north. You would be better served to enroll your husband there!
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Old 07-26-2011, 09:08 AM #10
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Default Re: fundraiser needs help

Wow! I never expected such a harsh rude... in a sense "go to hell" attitude from any ALS patient. I have researched. I am aware of trials here. I am also aware that you can not be diagnosed for longer than 24 months to be accepted into these trials.
So, please go on with your wishful thinking hoping a cure will fall from the sky. When that works, I am sure that yes we will all hear about it but I won't be waiting for that day.
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Old 07-26-2011, 09:59 AM #11
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Default Re: fundraiser needs help

Also, I would like to remind you all the ALS Forum is a support community who shares, encourages, helps, gives advice and shares experiences, etc. Not to mention "friendships". If any of you feel that you have done any of those things, then congratulations. Be proud of yourself. I understand everything you say, however, there are ways to say these things without destroying hope and eagerness to learn from all types of treatments. Again, congratulations. I have not felt this bad since the Neurologist declared his diagnosis! You should all be very proud.
This topic was put under "events" not any other heading for a reason. If you felt you didn't want to help, fine. Your choice. But the "how dare you ask any of us..." has no place in an event announcement. How any of you expect to actually learn is beyond me.
So thank you, congratulations, we will do things our own way, without your support and negativity. I'm sorry that you have that in your life. ALS is what it is, but you can make a choice to be a part of the solution.
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Old 07-26-2011, 10:48 AM #12
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Default Re: fundraiser needs help

I'm truly sorry your feelings were hurt and people were not as kind to you as they could have been. I know you are just going to try anything in hopes something will work. We did the exact same thing but I didn't know about this forum at the time I wish I did.
My mom went so fast we didn't have time to join forums and look for support. I had a strong feeling it wouldn't help but we had the money for it and truly felt it was a nothing to lose situation. Even an opportunity to travel since mom had never left the US.

If you don't have the money for it then you do have something to lose, your money and the money of other well intending people. I can definitely see how you rubbed others wrong by asking for money here. ALS is a disease of devastation from every angle especially financial devastation.

I'm sorry your feelings have been hurt, try to keep in mind posters here have been here for years and every week someone comes in to post they want to try stem cell treatment in a foreign country which has never been shown to help anyone. I don't think they are seeing you as an individual, rather lumping you in with the hundreds that come here to say the same thing.
When someone you love is dying desperation sets in especially when there seems to be no hope. I would like you to really think hard about this decision and learn from those of us who really have been there done that.
Who is this ALS patient you say has benefited from it?
We researched the Stem Cell treatment in Germany which was pretty new there back in 2009 when we did it. We found two people local in the US that benefited from it but neither had ALS. The only ALS patients that had tried it in the US were too recent to know if results would be seen and the ones that they claimed saw results did not speak English. They also were very upfront with us that the results that were seen were very minor and that there was a very good chance this would not help her.
My mom's neuro said he couldn't advise her either way but would be interested to hear how it went which gave us hope.
Nobody here would EVER want to crush your hopes. Everybody here wants to you have reasonable expectations and not hold on to false hopes.
My advice which I give with love and support is to have your fundraiser, but then take an awesome unforgettable vacation for your family because in the end that will what you would benefit the most from.

Here’s to holding hope a cure will be found that is what we all want so badly.
I really wish your family the best and hope you won’t hesitate to come here for support because it is widespread here and I have developed some friendships I value very much.
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Old 07-26-2011, 11:52 AM #13
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Default Re: fundraiser needs help

sdix@dixhonda.com, I wish you all the best with your husband and pray that he gets better. I also have 3 children, and they are my life! But if I had the money to do something, I wouldn't gamble my life on unproven stem cell treatments, as patients have died from these treatments. Have you checked into the Israeli clinical trials? They may be accepting patients, and that may be a more valid use of your husband's time. And I say "time" not money, because that is what we're trying to gain.

Having said that, about 15 years ago a friend of mine went to Kentucky for stem cell treatment for her breast cancer, as the hospitals in Boston couldn't guarantee she would get the treatment or the placebo. She wanted her toddler son to grow up with her. Long story short, it was successful and she's still with us today. So miracles can happen, and we all need one.

Please don't begrudge folks here trying to look out for you, they DO care, and being the devil's advocate is a necessary role they have to play for all of us. Keep in touch, and let us know if hubby is feeling better when you get back?
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Old 07-26-2011, 03:21 PM #14
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Default Re: fundraiser needs help

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Also, I would like to remind you all the ALS Forum is a support community who shares, encourages, helps, gives advice and shares experiences, etc. Not to mention "friendships". If any of you feel that you have done any of those things, then congratulations. Be proud of yourself. I understand everything you say, however, there are ways to say these things without destroying hope and eagerness to learn from all types of treatments. Again, congratulations. I have not felt this bad since the Neurologist declared his diagnosis! You should all be very proud.
This topic was put under "events" not any other heading for a reason. If you felt you didn't want to help, fine. Your choice. But the "how dare you ask any of us..." has no place in an event announcement. How any of you expect to actually learn is beyond me.
So thank you, congratulations, we will do things our own way, without your support and negativity. I'm sorry that you have that in your life. ALS is what it is, but you can make a choice to be a part of the solution.
Before you start taking from -- or more properly in your case, begging from -- a community, you might want to contribute to that community first. And, before you start criticizing that community for not providing you with the support that you wanted, ask yourself how many people you have supported here. Essentially, you are reaping what you've sowed. You gave nothing -- you've received nothing.

Of course, we know you've been taking from here and not contributing for a long time, don't we? Member since 2008 and one post before this one. You've been dealing with your husband's ALS for three years, yet not one word of advice for another caregiver. Not one word of encouragement for a PALS or a CALS. Not even one expression of sympathy for the survivors of a PALS whose fight came to its end. But we're the ones who aren't living up to the mission of the forum? Gotcha.

And the person that doesn't want to learn here is you, not us. The documents that I posted further upthread were published by organizations specifically to inform and warn ALS patients about the various stem cell scams that are going on out there. Did you even bother to look at them? What do your husband's' current doctors think of this scheme of yours?

What is this mysterious Indian stem cell center and what research papers about their procedures have they published? You claim we need to be educated, so educate us. What do they do and how do they do it? Are they using embryonic stem cells or induced pluripotent stem cells? Autologous or donor cells? If donor cells, what type of immunosuppression are they doing?

Here's your chance to impress us dumb hicks with your expertise. Looking forward to your response.

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Old 07-26-2011, 05:02 PM #15
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Default Re: fundraiser needs help

You obviously haven't checked into the Emory stem cell trial. When they were recruiting for the first phase, my husband asked if he qualified and they told him he did not, as he could still walk and that was the ONLY reason. He had been diagnosed over 4 years. There was no qualification of 24 months or under!

Emory is having good result, thus far, with their trial.

If you think we are being hateful, you are wrong! And, I still believe you are wrong to ask for money from fellow pALS.

I hope you will answer trfogey's questions, so we might also benefit from what you know, that we don't.
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