Old 01-21-2015, 02:11 PM #1 (permalink)
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Default Lunasin Study,Anti-Epilectic Drug Study, BioMarker Study

We were at Dr. Bedlack's Duke ALS Clinic yesterday. Dr Bedlack is involved in three studies in a few months.

1. Lunasin - which he seemed optimistic about. This is a one year study with three visits over the course of a year.

2. Anti-eplectic drug - he didn't say the name of it. This is a 12 week study with six visits required to the clinic. He seemed highly interested in this one as well.

3. Biomarker which will consist of a blood test and spinal tap. Honestly I forget exactly what it is they will be looking for because it was such a busy day at the clinic for us. I mention it because maybe there is some interest amongst the members.

He is also highly interested in the vitamin D levels and tested my husband for this yesterday. if they are low he will prescribe him a supplement and we will see if there is any quieting of symptoms.

We have been going to the Duke clinic since 2010 and we have never seen the staff with as much optimism as we did yesterday.
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Old 01-21-2015, 02:36 PM #2 (permalink)
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Default Re: Lunasin Study,Anti-Epilectic Drug Study, BioMarker Study

MGH is optimistic as well. The epilepsy medicine is retigabine. Showed promise in IPS studies done by Dr Eggan at Harvard. The biomarkers are looking for things they can use either to diagnose earlier or to find something they can track in clinical trials to measure effectiveness
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Old 01-21-2015, 03:50 PM #3 (permalink)
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Default Re: Lunasin Study,Anti-Epilectic Drug Study, BioMarker Study

Thanks Nikki! I just saw the folder for Drug Trials, I should have put it there!
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Old 01-21-2015, 04:24 PM #4 (permalink)
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Default Re: Lunasin Study,Anti-Epilectic Drug Study, BioMarker Study

Nikki, you always amaze me with your knowledge in so many areas about what is going on. Just out of curiosity, in your life before ALS were you in the medical field or have you become an expert out of necessity with your familial ALS? This forum is so lucky to have you!
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Old 01-21-2015, 08:53 PM #5 (permalink)
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Default Re: Lunasin Study,Anti-Epilectic Drug Study, BioMarker Study

Just saw the alsa press release of the possible connection between als and parkinsons disease. They have found a gene defect in parkinsons which messes up the quality control of protein synthesis in the endoplasmic reticulum . They think this could be a lead for a mechanism to the brain protein issues in als. Particularly interested in this since 2 people had Parkinsons in my husbands family butno ALS.
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Old 01-22-2015, 06:46 AM #6 (permalink)
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Default Re: Lunasin Study,Anti-Epilectic Drug Study, BioMarker Study

Mary, did Dr. B mention how or when they would start enrolling PALS in the studies? We've been excited about the Lunasin study since he mentioned it last year.
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Old 01-23-2015, 06:56 AM #7 (permalink)
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Default Re: Lunasin Study,Anti-Epilectic Drug Study, BioMarker Study

Becky,

I believe he said March. If you shoot him an email he'll respond pretty quick. He said this study out of his clinic will have 50 patients.
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