Jump to content
helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    
adiaz

23andME PD Genetic Research

Recommended Posts

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

EXPIRED - OFFER NO LONGER AVAILABLE  -

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.

 

 

Parkinson'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.

Edited by adiaz
  • Like 1

Share this post


Link to post
Share on other sites

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.

 

----------------------------------------------------------------

 

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.com/pd/research_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

Share this post


Link to post
Share on other sites

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 :-D

Share this post


Link to post
Share on other sites

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.

  • Like 3

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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,

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

Still no response from my email request from 23andMe for clarification but I have been reviewing the results with a little more clarity. If I am understanding correctly, it says I have a decreased risk for PD ("slightly lower odds of developing PD, between 1 and 0.67 times typical odds/risk.) I don't know what to do with this information but will certainly share this with the Dr. next visit. The other results are interesting, so far nothing earth shattering. I guess I was under the delusion that this test would either exclude you or include for PD.

  • Like 1

Share this post


Link to post
Share on other sites

Can a blood test determine parkinsons disease?

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

 

No, but bloodwork can determine if you carry one of the mutated PD genes. Even if you do, it doesn't always mean you will develop PD. I had my bloodwork drawn two months ago (mid December), and just got my genetic results back last week. Turns out I do have a variant on the LRRK2 gene. I have a PD dx, and am young, so they did the bloodwork on me to find out more.

Share this post


Link to post
Share on other sites

OK, so I received my results back from 23andMe. They don't say whether or not I have the variant of the LRRK2 gene. They just say which genes are high risk and low risk for me for mutation. Anyone have the same issue? The report does state that I am at typical risk for PD and that it is 73% probable that it is environmentally related.

 

Any feedback would be awesome.

Share this post


Link to post
Share on other sites

I received my results from 23andMe today. According to the results I have slightly higher odds of developing PD on the "Parkinson's Disease: Preliminary Research" section of the report. However, under the "Parkinson's Disease" section, I have a 1.3% chance of developing PD. That's less than the average with someone of my ethnicity. My odds of developing PD based on my genetics is low. I think I should play the lottery tonight. Maybe I'll get lucky again.

 

Dave

Share this post


Link to post
Share on other sites
Guest
This topic is now closed to further replies.

×