Need help regarding stem cell clinical trials, please :(

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Manda

Member
Joined
Jan 12, 2016
Messages
12
Reason
Loved one DX
Diagnosis
05/2015
Country
US
State
California
City
Santa Clarita
Hello my name is Amanda and I am 20 years old. My father was diagnosed with ALS in May of 2015. He is my rock, my everything. My mother suffers from alcoholism and schizophrenia so it has been incredibly difficult, to say the least. Without my father, I don't know how we will survive. So I am writing this because I would like to know how to get my father involved in stem cell clinical trials (any type)? How can I sign my father up for future trials? What is the best approach? Any information on stem cell trials in the US or not in the US would be very helpful.

Thank you
 
The place to look for all kinds of trials is clinicaltrials.gov. Search amyotrophic then narrow by open trials and location. Welcome. Sorry about your dad. Stem cells are promising yes but a touch hyped just now. Still if you can find a trial ( as opposed to an organization charging money for a scam) it would e worth pursuing probably. Keep chevking the clinicaltrials page if you don't get a hit right away
 
Manda, don't fall for any of the stem cell 'clinics' out there. Stick with the trials at the respected institutions.
 
Amanda,
I don't think any stem cell trials are recruiting right now, but some other decent options are, in Cali. Check the list.

Do you live with your parents? Will you be your dad's primary caregiver? You might want to check out the CALS forum if you haven't already.

But I also have to say that most of the options being tested right now have a rather modest benefit so it is not all that likely that your dad will have a significantly longer life simply because of whatever trial(s) he enrolls in. Using the Search function, you will find suggestions for things that will extend his quality and quantity of life: avoiding falls, adequate nutrition, selected supplements, breathing support as soon as needed, stretching/range of motion exercise/massage, etc.

Your family has a lot of issues beyond the standard preparation that we suggest here. I would suggest that two or three of you meet soon with a social worker at your dad and/or mom's clinic to discuss care, logistics and financial options as your dad's disease progresses, and that you make sure in the near future that your dad and mom have advance directives, Wills and financial/health care power of attorney documents that reflect your extended family and friends insofar as this is needed. And we're all very sorry that you find yourself in this situation. We will help however we can.

Best,
Laurie
 
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