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janey

Parkinson's with GBA or LARK and 9/11

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Hi,

I am newly diagnosed, late 40's. I have a theory and am seeking to gather a statistically significant sample in order to petition the 9/11 Zadroga fund to support those of us impacted, including impact on our families. Also, research! If we gather a solid sample, I expect researchers may be interested in learning more about threshold events and GBA/LARK. This might help in the future.

Factors:

GBA or LARK variant (genetic testing through 23 and Me or also through PPMI/other genetic testing)

Lived in NYC during and following 9/11

Likely Ashkenazi Jewish heritage, although I think if you have the genetic variant and are not Ashkemazi we may still be able to build a viable sample

Early Onset

Diagnosed in the past 2-4 years (2013-2017)- symptoms might be longer standing...but looking at date of diagnosis 

 

Please drop me a note or PM me if you meet these variables. And if you know anyone else...send them my way.

 

thank you!

 

 

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Hi Janey,

I would be very interested in your results.  I am GBA and LRRK2 positive and fit all your variables except I was not in NY around 9/11.  I however was living in a situation with a lot of fear for about 10 years before my diagnosis.  I wonder if the ancestral fear of jews that may be embodied in the mutations combined with the real fear set this in motion as it seems like it would around 9/11 as well. I hope you can find people and you'll come back and share what you find.

best wishes,

Lena

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Thank you Lena. I think, how could there not be an ancestral/lineage fear connection...!! Fear beings such a large part of my Jewish experience. It's like I carry it forward for my peeps. Would sure like to break that cycle. 

I will definitely report back in. So far there are two of us. I just started. So where there are two...

 

 

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I definitely think you are on to something.  I hope that if I can heal myself, which I intend to do, I can pass that healing back to my ancestors and forward to my son.  Hopefully healing some of the karma of the fear.

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Hi Janey,

I don't have any Jewish ancestral link and never done any genetic testing before,but I used to work in NY around 9/11 and have visited lower manhattan during the months after 9/11.I hope I can fit in.

 

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Lena,

I wish that so much for you and for your son and for his children and so on as the DNA travels...

As time allows, I look forward to hearing more about your healing journey and will share mine.

 

 

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Otolorin,

Hi! Thanks for your interest. I suggest you invest in the 23 and Me testing- if that works for you. I think for the purposes of this attempt, I need to control the variables as much as possible...for example people with MS have petitioned the fund and been turned down- there are too many variables. BUT! If we can show some possible causality between the interplay of genetics hitting a threshold, "on" moment...then maybe we have something. Being Jewish is less important as a variable. It just happens that the gene is pretty prevalent in Ashkenazi populations. 

Long winded way of saying...if you have the genetic marker then, yes!!

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