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  PSGFL

ANNOUNCEMENTS
​


 




John W. Paul   1934-2020

We have lost a special member of our support group;  in fact, he founded our particular group based in Canandaigua. Thus, we have so much to thank him for.


 In 2008, the only support groups were scheduled in Rochester, a difficult evening trip for people already dealing with an unexpected diagnosis of Parkinson Disease.  For 20 years he dealt with the disease and helped to establish our support group in Canandaigua along with his wife, Pat Smith.   We owe John a debt of gratitude for starting our group  with 12 people now grown to over 100. 

Please, download his obituary and  his memorial service on UTube by clicking the links below.  


https://youtu.be/6RSzzfOcW9w


https://mail.google.com/mail/u/0?ui=2&ik=ced9622a1b&attid=0.1.1&permmsgid=msg-f:1704000507559027060&th=17a5d36ef6242174&view=att&disp=inline




D. Parkinson Clinical Genetic Study
                  ​ 15,000 enrollees needed. 

Details are listed on Parkinson.org/PDGENEration.


STEPS
.  Go to the website noted above
.  Watch the video
.  Site includes the Informed Consent Form
.  Click "Enroll Now"
.  Fill out the questionnaire and submit
.  You will be contacted with the enrolling site near you to schedule your appointment (in person or by Telemed)
.  The protocol allows in-home participation through telemedicine.

FURTHER INFORMATION
Testing: The panel tests 7 genes for those with Parkinson's Disease.  At this time they are ONLY testing those with PD, NOT family members.

At-home protocol:  The kit has 3 Buccal cheek swab kits, which will be sent to you by prepaid Fed.Ex. package.  PLEASE NOTE:  Do NOT open until you meet with one of their counselors and/or clinicians.

Telemed Visit:  Have your Care Partner assist during the Telemed visit, which will take 2 hours.
 
Results: Final details will be returned in 6 weeks, and you will get a phone call to schedule an appointment with a genetic counselor.

Questions:  
genetics@parkinson.org
www.Parkinson.org/PDGENEration









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  • Home
  • ANNOUNCEMENTS
  • Meetings
  • Contacts and Resources
  • History
  • Patient Corner
  • Care Partner Corner
  • SCHOLARSHIPS
  • Donations
  • THANK YOU
  • SLIDE SHOW
  • CoVid-19 Virus and Parkinson's