Old 03-11-2017, 03:32 PM #1
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Default Observational FALS/ FTD study

Update:

We have finally connected with Jon's relatives with an ALS association. From what we understand they have either had ALS, familial frontotempral dementia or a combination of the two. The family members are being studied at the Mayo Clinic in Rochester, MN.

Last Monday I called the Mayo and spoke with the Coordinator who is in leading the LEFFTDS (longitudinal evaluation of familial frontotemporal dementia) study. She spoke with Dr. Bradley Boeve the lead PI and we were immediately accepted into the study. We head out to the Mayo in mid April. Even though this is an observational study, we felt it was worthwhile to enroll in. Anything that we can do to help with a cure is worth doing! Jon will also be able to receive genetic testing for free which our insurance company has denied.

My apologies, I know this post does not belong under the Sod1rx BIIB067 heading but I wasn't sure where to put it.

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Old 03-11-2017, 03:41 PM #2
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Default Re: Observational FALS/ FTD study

Thank you for doing the study. His participation will help immensely. One researcher told me " this ( meaning a C9 biomarker study) is the only way we are going to get answers" ( presumably for c9 though they hope those answers will translate)

It sounds quite likely he will be c9 given the family history. I was recently told c9 gene blocking trials are on track to start in about a year

Can you share a link to this study?
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Old 03-11-2017, 03:53 PM #3
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Default Re: Observational FALS/ FTD study

https://clinicaltrials.gov/ct2/show/NCT02372773
Hi Nikki,

I hope the link worked. The coordinator did talk about an LP for biomarker. We are excited and anxious at the same time to participate.

Jenn

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Old 03-11-2017, 04:46 PM #4
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Default Re: Observational FALS/ FTD study

Thanks!

The lp part seems to be very important. I have had a number of them. Among other places, I know my csf went to Mayo Jax and Dr Bowser at Barrow/ Iron Horse. Both of those are developing a biomarker based on csf. It also went to Biogen and Biogen is developing the antisense gene blocking for c9. All the people who have done my lps were extremely skilled and also very appreciative that patients would do this to help research. Thank him for participating
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Old 03-11-2017, 05:35 PM #5
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Default Re: Observational FALS/ FTD study

Just under a year ago we were planning our next family Florida vacation in April. If you would have told me that I would be in Rochester, MN I would have called you crazy! Jon has a tremendous attitude and we are going to make the best of our few days away.

I will thank him from you for participating. It's really interesting, he's always had odd little things that doctors could not figure out. We've been together almost 20 years and since I have known him he's had an unusual amount of cramps and spasms.

Maybe totally unrelated, maybe not! He's convinced they will find something, somewhere in his body to further science LOL!

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Old 03-11-2017, 06:54 PM #6
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Default Re: Observational FALS/ FTD study

Please thank him from me also.

My husband was SALS but had bulbar onset and FTD. I am in awe of anyone who can contribute to research and trials of any kind. THANK YOU
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Old 03-11-2017, 11:24 PM #7
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Unhappy Re: Observational FALS/ FTD study

I definitely will Tillie. I'm so sorry your husband had bulbar also. This disease just plain sucks! It is tearing me up inside to watch him lose a little more every day. His voice is just about gone and we are having a brace made for his left leg, but honestly his balance is so bad I'm not sure how well it will work. I'm sorry for the vent, it's late and I'm tired...

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Old 03-12-2017, 09:30 AM #8
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Default Re: Observational FALS/ FTD study

Jenn, my PALS has bulbar. He is balance was really bad. He started using his AFO's almost a year ago and it made a huge difference. He was able to quit using his cane for almost a year. I hope it helps.

This disease SUCKS, for sure!
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Old 03-12-2017, 10:39 PM #9
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Default Re: Observational FALS/ FTD study

Thanks, that is really some positive news, hopefully it will be done this week!
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Old 03-22-2017, 10:21 AM #10
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Default Re: Observational FALS/ FTD study

Well, we're all set, we will be going to the Mayo Clinic from April 18th - 20th. We are awaiting the detailed itinerary, but it sounds like 3 days packed with blood tests, scans, an LP and memory tests. I think I am more worried about Jon going through all this than he is. He is focused on anything that he can contribute to help understand and find a cure for ALS, his focus and drive continue to amaze me every day!

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Old 03-22-2017, 12:18 PM #11
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Default Re: Observational FALS/ FTD study

That is awesome. kudos to you and your family
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Old 03-22-2017, 01:41 PM #12
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Default Re: Observational FALS/ FTD study

That's wonderful, but it will be exhausting! Thank you both again so much, it means a lot to every one of us around the world.
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