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Meghan98ray

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Mar 25, 2018
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Loved one DX
Diagnosis
03/2018
Country
US
State
Ohio
My Dad who is 60 an active and daily exercise this entire life was just diagnosed with ALS last week. We are totally devasted and feel completely overwhelmed at the task of trying to slow or better yet stop the progression of this disease. He has 4 children, a wife, 3 young grandchildren that look to him as his superhero and many more that need him. We feel desperate to search the internet and feel like our heads our spinning trying to find his particular cure to stopping this progression. I am searching for people who have done some sort of stem cell transplants and if so which one and how did it work for them. We are willing to travel anywhere even outside of the country for something that will work for him. Please if anyone has had a stem cell transplant can your please respond to me with what type, where you received it and if it slowed or stopped your progression of the disease. I am begging for help my babies cannot loose their best friend like this.
 

KimT

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Joined
Nov 18, 2014
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3,200
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
There is only one reputable company for stem cell therapy and they are doing a Phase 3 trial shortly. All the others are scams. Please don't get taken in by empty promises.

If stem cell transplants worked for ALS, it would be all over the Internet and in all the news.

I do think this Phase 3 trial will shed light on how far we've come in treating ALS with stem cells.

The trial's cutoff age is 60.
 

Nikki J

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Joined
Mar 22, 2012
Messages
7,252
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
If you search here for stem cells you will read the group opinions on stem cells for money. We have not had people report back any positive outcome and there are reports of bad outcomes. Steve Gleason apparently had a worsening after but there are others.

There is a clinical trial which is the only way I would tell you to pursue this. The top eligibility age is 60. This is the link https://clinicaltrials.gov/ct2/show/NCT03280056?recrs=a&cond=Amyotrophic+Lateral+Sclerosis&cntry=US&state=US:MA&rank=10

One of our members found out details. Please read her thread https://www.alsforums.com/forum/als-drug-trials/41146-nurown-stem-cell-phase-3-study.html#post435470

I know you love your dad very much. The choice to try for the study is not an easy one so you need to let him decide.

Even if he did the trial and did not get placebo it is not a cure. The hope is to slow things but it is still experimental.

I am sorry about your dad
 

GregK

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Joined
Jan 29, 2013
Messages
2,775
Reason
PALS
Diagnosis
11/2012
Country
US
State
CO
Stem cell clinics prey on desperate people. Your dad's diagnosis makes you desperate.

Please don't let your desperation make you a fool.

Except for Brainstorm and one other FDA approved trial, there is NO long- or mid-term benefit from stem cells. Over the course of my five years since diagnosis I've seen "a few" people fall into this scam. Two, only, reported back a temporary boost in strength, but fell silent after that.
I believe that they're dead.

Stem cell treatments, including the Brainstorm trial, are temporary. Even when effective, there have to be follow-up treatments. And the 'clinics' charge dearly. I saw discussion concerning one clinic patient bankrupting his family.

Please do not fall for this scam.
 

Bestfriends14

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Senior member
Joined
May 7, 2017
Messages
583
Reason
CALS
Diagnosis
05/2017
Country
CA
State
Alberta (AB)
I'm sorry to hear of your dad's diagnosis. I concur with what others have said in that these stem cell clinics prey on desperate people. There was a very young person at our clinic (24 years old), diagnosed with ALS. In the family's desperation, they pooled together 100k for stem cell treatments in S. Korea. Our neuro said that the only thing this individual got from the treatment was a 100k hole in their pocket.

In all honesty, and just my opinion, the money would be better spent on making the best memories possible for you, him and his grandchildren. There are many necessary expenses that are a must to spend on with ALS, too. Having money for those expenses would be most beneficial for your dad and for his future care and comfort. Again, I'm sorry you and your family are finding yourselves at this crossroad.

Big hugs to you and your family.

J
 

nanasgirl

New member
Joined
Oct 25, 2017
Messages
1
Reason
Loved one DX
Diagnosis
08/2017
Country
US
State
new mexico
Try and enjoy each day. I agree, if stem cell transplant worked, everyone would be doing it.
 
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