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Real members of MyParkinsonsTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
August 28
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A MyParkinsonsTeam Member

Yes, @A MyParkinsonsTeam Member, anyone with a Parkinson's diagnosis can participate by contacting the Parkinson's Foundation directly. I thought that that I had posted the link, but I don't know where to find it now.

August 28
A MyParkinsonsTeam Member

Hi @A MyParkinsonsTeam Member, the Parkinson's Foundation contacted me, probably because I had filled something out somewhere along my journey, saying that I might be willing to participate in a clinical study. The person who called me, explained that they were wanting to study the genetics of those who had been diagnosed with Parkinson's and asked if I could come to KU Medical Center? I told her that I would very much want to be in that study and that I actually had an appointment coming up with my neurologist at KU Medical Center. My neurologist's office confirmed my diagnosis, I informed my doctor at the end of my appointment that the Parkinson's Foundation wanted to meet me after my appointment with her for a blood test. She also wanted some blood work done and directed me to the lab where they were waiting. Everyone got the amount of blood they needed for whatever tests, and I was on my way home.
I later got notice from the Parkinson's Foundation that I did not have the specific genes they were looking for, but I could offer to participate in the next set in which, I understand that they will be looking for a new set of genes. I am not certain if I am already signed up for the next one or not.
My response is probably not all that you were hoping for, I am sorry to say, but it's all I have for the moment.

August 29 (edited)
A MyParkinsonsTeam Member

Thanks, great detailed information that I already knew. I contacted the foundation as my attempt to get the home test kit online failed after 1st answering a few screening questions. Then it abruptly stated the mail order kit program was suspended? Dianna on the foundation helpline was great and said it might be up in a few months. She gave me the name and # of the local woman, Amanda Fessenden Coordinator of the PD Generation Test program at UF Gainesville, Fl. They are authorized to give the test and needed counseling and I will go there. It takes 3 months to reach the counseling point. People who request the test must already have Parkinsons. How to prove that, Dianna didn't know? I already have it so why the counseling? Gee Remrod sorry to say you have Parkinsons and have some genes that maybe passed on to offspring. At 71 knowing I have Parkinsons and not planning on having children its a waste of time and tax dollars. When the Neurologist first told me after the DaTscan. "Sir you have Parkinsons" thats when counseling might have helped. He stated that like when an ASE certified auto technician tells me, yes your tire us flat.

Left UF two messages so far. Their voicemail only had the generic answer that came with the system that the party wasn't available. No name or department mentioned in the canned responce.

I am looking to hear from a person who actually went through the arduous process already. Sorry if I am wrong, but my feeling is your an AI response. Please answer me back to prove your not. Thanks.
Remrod.

August 29
MyParkinsonsTeam

PDGeneration is a great initiative from the Parkinson's Foundation! It offers free genetic testing and counseling to people with Parkinson's, helping to identify gene mutations that may be linked to the condition.

Here's what to generally expect from the process:

- Request a kit to test from home or visit a participating Show Full Answer

PDGeneration is a great initiative from the Parkinson's Foundation! It offers free genetic testing and counseling to people with Parkinson's, helping to identify gene mutations that may be linked to the condition.

Here's what to generally expect from the process:

- Request a kit to test from home or visit a participating neurologist
- Provide a saliva sample which is sent to a lab for analysis
- Receive genetic counseling to help understand your results
- Results are shared with you and, if you choose, your care team Knowing your genetic profile can be really valuable. Around 10 percent of Parkinson's cases are linked to an inherited gene mutation, and identifying one could open doors to more personalized treatment options or eligibility for specific clinical trials.

Many MyParkinsonsTeam members have found genetic testing to be an empowering step in understanding their Parkinson's journey. It's always worth discussing the results with your neurologist so they can help guide next steps in your care.

August 28

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