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23andME PD Genetic Research


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#1 adiaz

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Posted 05 May 2009 - 04:24 PM

The National Parkinson Foundation and 23andMe are partnering on a genetics research initiative and you can participate!

All it takes is $25, a small saliva sample, and a willingness to participate in online surveys.

The partnership between NPF and 23andMe will allow up to 10,000 people with Parkinson's to receive a reduced membership rate to the Personal Genome Service. The goal is to use the genetic information of those with Parkinson’s to enhance our understanding of the disease and accelerate new discoveries and therapeutic breakthroughs.
What else can you learn from your genes? We encourage you to visit the 23andMe web site to learn more about their project.

The reduced rate of $25 (reg. price: $399) is only for people who have been diagnosed by a physician, but we encourage non-patients to spread the word to people with PD. This discount is due to the generous support of Google co-founder Sergey Brin.

If you are a person with Parkinson's disease and decide that you would like to participate in this innovative research project, fill out the online form to request a code to use to
access the $25 price.


To request a discount code visit: http://www.parkinson.org/23andMe
For details on the project visit: http://www.23andme.comParkinson's and Genes
Just a few years ago, genes were thought to have little influence on Parkinson's disease.
But now a growing number of Parkinson's-causing mutations are being discovered. We think we can learn even more with the help of 10,000 people willing to share their experience

A New Kind of Research
You can help revolutionize the way Parkinson's research is conducted. Parkinson's is a complex disease with both genetic and environmental components. By participating in this
initiative, you'll be joining an unprecedented effort to understand how the two work and interact. You'll also see the progress of this research as it moves ahead.

#2 Beachdog

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Posted 25 June 2011 - 04:06 PM

I signed up yesterday through a MJF link and didn't have to pay The $25... (I hope)

#3 FredericB

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Posted 26 June 2011 - 04:04 AM

Below is Michael J Fox Foundation's communication through a mailing list they sent this Friday 06/24.

Link to register is https://www.23andme.com/pd/ - which states subscription is free.

Communication by 23andMe about fees for Parkinson's research is relatively inhomogeneous. When asked directly via email, they confirmed that subscription was intially $25 but that Sergey Brin offered to completely cover the cost for people with PD for the time being.

While cost can be an issue, conceptually and/or financially, key point is the one reminded by Todd Sherer, CEO of MJFF: "The decision to explore your own genome is one deserving of thoughtful deliberation." - this is a personal decision that can benefit the entire community but is first of all an act you should feel comfortable with.

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Dear Friend,

You can be part of an ongoing research project that could help speed the progress of improved treatments for Parkinson’s disease.

Two years ago, personal genetics company 23andMe created a Web-based Parkinson’s Research Community to examine how genes and environment are related to the disease. I wanted to provide an update on the project and let you know how you can get involved.

In the relatively short period since its launch, 23andMe’s innovative approach to genetic research has been validated. In a fraction of the time that traditional research requires, the 23andMe study has already verified many previous genetic associations with Parkinson’s. What’s more, 23andMe has discovered two new genetic associations with Parkinson’s, a finding that was recently published in PLoS Genetics. These finding shows that a considerable proportion of the genetics of Parkinson’s has yet to be explained while also confirming the importance of environmental factors. 23andMe is now one of several groups participating in the largest collaborative genetic analysis of Parkinson’s to date. They have identified a genetic target that may modify risk for Parkinson’s and are working with an external academic partner to explore this possibility. This progress was made in part because more than 5,000 people like you chose to participate in the study.

Accelerating the development of new and better Parkinson’s treatments is The Michael J. Fox Foundation’s mission. For that reason, we have collaborated with 23andMe to help publicize this novel approach to research and encourage enrollment in the Parkinson’s Research Community.

23andMe is halfway to the goal of enrolling 10,000 people with Parkinson’s in the Research Community. A cohort of this size has the potential to make breakthrough discoveries and offer possible targets for treatment. The 23andMe approach enables these discoveries to happen rapidly. But it can’t happen without your help. The more people who enroll in the project, the more powerful it becomes. We hope you will consider joining.

Participation is free and open to anyone who has been diagnosed with Parkinson’s by a physician. The study is conducted entirely online, so you can take part from any location. As a participant, you will provide a saliva sample for DNA testing and fill out online surveys about your symptoms, experiences and environmental exposures. In return, you will be able to see your own genetic information, including whether you carry certain mutations associated with Parkinson’s (you can also choose not to view these results). If you choose to see your results, 23andMe provides knowledge and support to put them in context through online tutorials, videos and the patient liaison (pd-help@23andme.com). Additionally, community members are kept informed of research discoveries made possible by their collective participation in the project.

To learn more, visit www.23andme.com/pd. Or enroll at www.23andme.com/pd/codereq.

If you are already a member of the 23andMe Parkinson’s Research Community, thank you! Check out the discoveries you helped make possible at https://www.23andme....h_discoveries/. You can also see new genetic data in the PD report and fill out new surveys on factors that might play a role in Parkinson’s, such as caffeine use and pesticide exposure.

The decision to explore your own genome is one deserving of thoughtful deliberation. There is currently no specific therapeutic action to take in response to learning you have or are at increased risk for Parkinson’s. But The Michael J. Fox Foundation is hopeful that novel approaches, like this one, will advance research into therapies and a future cure. I hope you will consider enrolling today.

Sincerely,

Todd Sherer, PhD
Chief Executive Officer, MJFF

#4 Beachdog

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Posted 10 August 2011 - 10:50 AM

Got my results today. A lot to digest but indicated I have a better than average chance of getting PD! (safe bet on that one).

Also targeted many other ailments - lower than average chance of Alzheimers - which I hope is true!

Worthe signing up to spit in the bottle if you haven't done so :grin:

#5 steve25

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Posted 18 August 2011 - 04:25 AM

HI I`M STEVE FROM USA JUST JOIN YOUR FORUM AND PERSONALLY I LIKE IT

#6 brandonmarkings

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Posted 17 October 2011 - 11:50 PM

Can a blood test determine parkinsons disease?
Can a blood test determine if you have parkinsons disease. im scared!

#7 Beau's Mom

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Posted 18 December 2011 - 09:24 AM

Can a blood test determine parkinsons disease?
Can a blood test determine if you have parkinsons disease. im scared!


No, Brandon, PD cannot be detected by a blood test. Or an MRI, a CT Scan, or anything but clinical observation by a doctor, neurologist, or Movement Disorders Specialist, and unfortunately that is not always accurate, either. Before I was diagnosed I wanted more than their opinions to confirm whether mine was PD or medication-induced Parkinsonism, which can go away after you stop taking the offending medication. I had one opinion from a neurologist that he "guessed" I had PD. The next two opinions, from MDS's at two Centers of Excellence, were that they weren't sure, and then that it was almost certainly Parkinsonism, and that I needed a newly approved test called a DaTScan, which wasn't and probably still isn't widely available, to determine the diagnosis. When I moved in June to Washington State, I saw an MDS at the Parkinson's Center of Excellence at Evergreen Medical Center in Kirkland. Dr. Griffith said she didn't need a DaTScan to diagnose me, and she confirmed PD. I guess I just didn't want someone's opinion on it. I wanted science to substantiate it. For me, it was mostly time and symptom progression that determined my diagnosis. I was VERY scared, but all that worry and fear didn't change anything but how peaceful I could feel on any given day. Stress (from worry, fear, just life even) makes PD worse. Hang in there. Your answer will come at just the right time, and whatever it is, you'll be able to handle it.
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#8 lewisandclark

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Posted 30 April 2012 - 03:23 PM

I think this research is so important. More and more, doctors and scientists are agreeing that mutated genes play a role in developing Parkinsons, whether environmentally or hereditarily linked (https://www.healthta...-what-causes-it). the more we know, the more we can look for a cure.

#9 aakash

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Posted 19 October 2012 - 07:12 AM

I think this research is so important. More and more, doctors and scientists are agreeing that mutated genes play a role in developing Parkinsons, whether environmentally or hereditarily linked (https://www.healthta...-what-causes-it). the more we know, the more we can look for a cure.

#10 she-ra

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Posted 19 November 2012 - 01:06 PM

Beau's Mom, I know I am responding to an old post but you could have been reading my mind. I just signed up for this test as well. I want some concrete evidence that I do indeed have PD. My first neurologist was so cavalier after asking a few questions and said, you have PD, I thought how could she know so quickly? I know she is the expert and in my heart I probably do have PD but there are too many unanswered questions. I am not sure if I am prepared to hear all the answers.

Sheila ^_^

 

Current age= 61

Symptom Onset- 2009 (56)

 

Current meds:Sinemet 3X/day (25/100) 


#11 Beau's Mom

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Posted 19 November 2012 - 05:41 PM

It wasn't as bad as I thought and as I recall, did not actually confirm the PD. It showed lots of other interesting risk factors as well, like breast cancer, heart disease. It's kind of like going to the Smithsonian; you could be overwhelmed by all the doors this opens, Let me know when you get your results. I can add you to the list of those I'm willing to share my results with,
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#12 she-ra

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Posted 26 November 2012 - 01:17 PM

Thanks, Dianne. I got the test kit but haven't used it yet. Too busy over Thanksgiving but will get to it this week. I did have a gene study done a couple of years ago but it was focused on cholesterol meds, (I am resistant to regular ones so I am on Crestor), predisposed to early onset heart attack and aspirin therapy won't be beneficial until after I have a heart attack. I will be interested in seeing the good news I get from the results to this test!

Sheila ^_^

 

Current age= 61

Symptom Onset- 2009 (56)

 

Current meds:Sinemet 3X/day (25/100) 


#13 williamg

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Posted 27 November 2012 - 07:08 PM

This is interesting and I would love to participate. Hopefully my meeting next month will have a diagnoses on paper so I can. I would love to know how many have confirmation and how many don't.
I'm not crazy, I'm just special!! ..No, wait..... Maybe I am Crazy. One second...... I have to talk to myself about this... Hold on......................

#14 she-ra

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Posted 05 December 2012 - 11:57 AM

Finally got my sample in the mail this morning. I am curious about the results. How long should the results take?

Sheila ^_^

 

Current age= 61

Symptom Onset- 2009 (56)

 

Current meds:Sinemet 3X/day (25/100) 


#15 Island Woman

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Posted 05 December 2012 - 12:08 PM

Got the kit in the mail the other day...right now not sure if I really want to know what other future problems could be bouncing around in my body...have to give it some thought.

#16 Beau's Mom

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Posted 05 December 2012 - 01:14 PM

Not to worry, Island Woman. There probably won't be anything that you don't already know from family history. Just spit away and mail it off. It will probably turn out that we are part of the same haplogroup.
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#17 Island Woman

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Posted 05 December 2012 - 04:04 PM

this DNA testing was just on the Jeff Probst show today...went mostly into his back ground...where his family came from plus comment about heart disease

#18 Vanillab1027

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Posted 05 December 2012 - 10:24 PM

Got my test kit too. Going to get my sample out by the end of this week. Can't wait to see the results!

#19 Prospector

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Posted 18 December 2012 - 11:04 AM

Just signed up for the kit. We will see how it goes
Dx Nov 2012 at 40

Meds: generic sinemet 25/100 x4 a day
Azilect 1 mg x1 a day

#20 Vanillab1027

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Posted 18 December 2012 - 12:00 PM

I sent mine back last week. Now waiting for the results.




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