Biomarker study

[wifeofparky]

Hubby's Specialist also does research and at his last visit asked him if he was interested in participating in his current study for biomarkers. I wanted to volunteer as a control but he wanted to think about it. Recently he asked when we were going to do the study so I called to volunteer us. Yesterday we took part in phase one- a general neurological exam, and testing in memory and depression. I admitted that stess has impaired my memory but I still did well but hubby did not. Phase two will consist of an MRI of the brain which takes up to an hour and a half and more psychological testing and interviewing.

We were thanked profusely by the staff and doctor for taking part. Hopefully this study will help find more info to promote better treatment or even better - a cure for PD.

[jillannf6]

HI

WHERE R U BASED

IA M IN THE UK LOL JILL

[wifeofparky in reply to jillannf6]

We are in the Buffalo, NY area.

[Joealt]

I've been involved with the Michael J Fox Foundation for Parkinson's Research study in Chicago for the past year. I have an appointment next week to get a DAT Scan, MRI and lumbar puncture. I am proud to be involved with this important study.

[Court in reply to Joealt]

I am in the process of registering with the Michael J Fox Research study in the UK though am not keen in taking part in anything that might affect my meds.

[jillannf6 in reply to Court]

hi sue

have u jmanaged 2 ge tont eh Michael J Foox research study/

i am not sure abotu it as i ahve psp and nto PD as such

lol JIll

[Court in reply to jillannf6]

Hi Jill. Been away this weekend but have partly filled in details for Michael J Fox trials. Will let you know how I get on.

Gather no news on the move yet?

Sue

[Hidden]

Court that is exactly why I'm concerned about being part of a trial. Went through a lot getting the right combination of meds.

[wifeofparky]

This one does not involve his meds. It is a study to determine how the brain is affected and hopefully help treatment by determining what stage the disease is in. It will hopefully help find treatments to slow down the progression of PD.

[jillannf6]

hi ALL

I hve PSP and there r no meds for it - so i shoudl not worry re any trial which ,might help ifnd a cure

AND the weekend starts here!!

hope ANDY is recovered from his infeciton ot kickstart it 4 ous

lol JIll

[muttie in reply to jillannf6]

HEY

AT MAYO CLINIC THEY HAVE ALMOST FINISHED A TRIAL FOR A MEDICATION FOR PSP!! DON'T GTVE UP ,,,,,,, THEY HAVEN'T FORGOTTEN YOU!!

[jillannf6 in reply to muttie]

hi

YES BUT IF IT SI DAVUNETIDE I CANNOT TAKE IT AS IT SI A NASAL SPRAY AND I HAVE FOR MANY YEARS HA D 2 USE ANASAL SPRAY FOR ALLERGIC RHINITIS

I coudl nto g o on the worldwide tirals for thsi reason

lol JIll

[janab in reply to muttie]

Can you tell me which Mayo Clinic you went to? I am thinking of going myself but don't know where. Is the one in Minnesota better than all the others? Arizona? Thanks.

[NanCyclist]

The Michael J. Fox PPMI study is incredibly important. As others have said, there is no interference with medications. Spinal taps are taken below the nerve centers so there is no possibility of nerve damage. The doctor in Seattle who gave taps to me and my husband has given over 1,200 without incident.

When they find biomarkers for PD they will be able to accurately measure the efficacy of interventions rather than wait for years to see if a medication does any good. Because of the certainty that there will be measurable outcomes once biomarkers are identified, at this point 11 major pharms have signed up to fund this along with MJFF. When we ask why so much money goes into finding cures for MS for example, it's because they have ways of measuring progression of the disease (MRIs to determine extent of lesions in the brain). This biomarker research will yield an equivalent for PD.

[muttie in reply to NanCyclist]

\\

HOW DOES ONE GO ABOUT VOLENTEERING. I LIVE IN ARIZONA IN TUCSON.MY HUSBAND AND I WOULD LIKE TO GET INVOLVED THANKS ELLIE

[NanCyclist]

Fabulous!! Go to the Michael J Fox PPMI website and find the center nearest you. michaeljfox.org/living_PPMI...

That's just wonderful that you and your husband want to do this. There are international sites as well for those of you not in the US who want to participate.