Research, to participate or not to participate

[Amanda]

Medical researchers learn a lot about ALS from their patients and from volunteers that have genetic mutations linked to ALS. Have you participated in any research studies or clinical trials? What are your thoughts on the topic and what role do you see yourself taking in regard to ALS research and clinical trials?

[Lea Gaylene Barron]

Can anyone give me information about the RCH 4 injections out of England? Is there a way to find out more about this treatment?

[Lisa Bonahoom]

I started volunteering for studies as soon as I was diagnosed.  I will fight this disease any way that I can.  When I found out that my ALS was genetic I redoubled my efforts.   My children are at risk.  Without clinical trials we have no hope.  The current meds do so little.  I did not qualify for NurOWN but I wish I did!  I was chosen for a trial that I can share when it’s over.  It gives me great hope! I continue with observational studies like PMP with ALSTDI.  I highly recommend doing whatever you can!

[Bill]

I’m in my second drug trial. I am also in a genetic marker study preFals. I was in a long term study for biomarkers which ended. I am currently still in the long term survey study with ALSTDI. I would volunteer for more drug studies but some of the newer ones require pALS with less than 18 months of symptoms. Others conflict with my current drug study.
In short, I volunteer for all I can, not for direct benefit to me but to help the research. If we don’t volunteer there would be no trials.  I did volunteer for the familial genetic study to try to find what mutation is in my family. It’s not the common one as it has created 3 different potentially fatal MND’s in my family. My kids would want to know their risk.  It’s a challenge to the researchers so far but still looking.

[Lea Gaylene Barron]

Dear Lisa:

Have you seen this site and heard of RCH4? I’m trying to find out more information about this and others for my aunt who was recently diagnosed. Thank you for sharing your situation. My prayers are with you.

<span>https://rch4als.com/what-is-als%2Fmnd</span&gt;

[Diana Belland]

Hello, Lea, there is a discussion of RCH-4 on the Forum here:  https://alsnewstoday.com/forums/forums/topic/rch-4/

I hope the link works for you.  If not, just go to Research Topics and click on RCH-4.

[Jean]

I don’t have ALS nor any mutations as best I can tell but my son and a brother have a SOD1 mutation. Two 1st cousins 1x removed and two 2nd cousins have passed from ALS. My husband’s mother passed from ALS (deemed sporadic in 1993).  Incidentally my husband and I are 4th cousins once removed and I question if our connected line is the ALS line.
I would love to have my son be involved in some research as I am terrified for him. I am a Hospice nurse and well aware what ALS does to a person and their families. Looking for guidance.

[Bill]

Jean

look up pre-fALS study at clinicaltrials.gov. I’m in that study as well as family. Try contacting one of the sites. Not sure if you’d qualify since you don’t have ALS but you could contact them anyway. They are doing familial ALS research.

 

Bill

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