Old 04-20-2017, 11:34 PM #1 (permalink)
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My mom passed away this past Thursday 04/13/2017 she went to Mayo in Fl. and participated in the bio marker research. She was tested and had the C9 gene her sister passed away 3 years ago with FTD. My mom only lasted a year after her diagnosis. She donated her brain and spinal cord. So I'm told that me and my brother have a 50/50 chance of inheriteing the C9 gene. Her Dr. Dr. Boylan wants me and my brother to participate in his study to help advance knowledge and possibly help with some type of treatment. Should I? I don't know if I want to know if I have the C9 or not. I want to know but I don't if that makes sense? I have a 11 year old son he is our only child and we will be having no more. Thoughts or opinions please!
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Old 04-20-2017, 11:59 PM #2 (permalink)
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Default Re: Opinions Please

This is just me, personally. I would do it. I would want to know. I would make a "life plan" based on the results.
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Old 04-21-2017, 12:00 AM #3 (permalink)
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Default Re: Observational FALS/ FTD study

Can you participate without knowing your status? My family in England are in a study where they don't know. There is an arm of the preFALS study at UMiami where you don't find out.

There will be answers for your son. I am sure. I am almost as sure there will be answers for you. Your mom helped with those answers. They have already learned a lot from those who donated themselves after. I attended a conference in 2015 where they talked about some of it.

Mayo Jax also has found a biomarker for C9 in the spinal fluid of PALS and carriers. This is new and they are still learning. They need more samples. I am happy that I was able to contribute to the original study as they used samples from the C9 study at NIH

Asymptomatic carriers are really important to the fight. One researcher told me when I was asymptomatic that my spinal fluid was as valuable as gold. Another said this is the only way we can get answers

I respect your not wanting to know. I chose to and never regretted it. Ask Dr Boylan if you can help with out knowing. Consider U Miami. There is also an FTD study as UPenn that will allow you not to know

My honest opinion is that if you want a cure try to find a way to contribute. NIH ( where you do have to know you are positive to participate) was only half enrolled after three years in a 60 person study. Slower enrollment means slower answers
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Old 04-21-2017, 01:44 AM #4 (permalink)
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Default Re: Opinions Please

I totally agree with Nikki - see if you can participate without knowing. Maybe you could then be tested, participate and give yourself heaps of time to decide if you want to change your mind and find out the results?

I don't know what I would choose. Something I learned while Chris was ill was that I don't know as much about certain choices I would make as I used to think I did. So I think I know what I would choose now, but I'm no longer positive I would feel the same if the choice was a reality to make.
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Old 04-21-2017, 06:44 AM #5 (permalink)
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Default Re: Opinions Please

Yes he said I can participate with out knowing.
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Old 04-21-2017, 03:17 PM #6 (permalink)
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Default Re: Opinions Please

I think I would only want to know if I had a very specific reason, like decision making around kids or education. Great you can participate without knowing if that's what you choose to do.
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Old 04-22-2017, 11:24 PM #7 (permalink)
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Default Re: Opinions Please

We just got back from the Mayo Clinic in Rochester, MN. My PALS is participating in the LEFFTDS Study with Dr. Boeve. All we know right now is that he has the C9 gene in his family.

Because we are in the study we could have the genetic testing done, but it was TOTALLY optional. We have chosen to have the test and will know the results in a few weeks. Dr. Boeve did stress with us that it is especially important to study people who may have the mutation, but don't express symptoms as well as family members who don't have the mutation at all.

He also told us he is going to a Neurology Conference next week in Boston, MA and will let us know of any new positive study results.

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Old 04-23-2017, 01:19 PM #8 (permalink)
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Default Re: Opinions Please

Thanks again for doing this Jenn. As you say, so important. If he is able would he also consider the c9 study at NIH? You have to be c9 positive to be in it but it is following the course of C9 ALS and FTD. They pay travel expenses for the participant and a companion. The samples and scans are shared with other researchers and a couple of findings have resulted. It was one of the contributors of longitudinal csf samples in the study that resulted in finding a c9 protein biomarker.

If you might be interested let me know and we can pm about it
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Old 04-23-2017, 04:29 PM #9 (permalink)
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Default Re: Opinions Please

Thank you all for participating in any studies. I would have made different financial and personal decision had I known 10 years ago that I would get ALS.
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Old 04-25-2017, 10:05 PM #10 (permalink)
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Default Re: Opinions Please

Thanks Nikki, we should be getting results back in a few weeks. If Jon is indeed C9, I think he would be interested in the NIH trial. Thank You!

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