Vasculitis Foundation Canada

By Jon Stewart

Annual Spring Meeting – Addendum-

Only one week to go until our spring Annual General Meeting (AGM)!  And, it’s still not too late to register via email for our AGM on Saturday, April 18, 2015, now with active research and two of the worlds top vasculitis researchers, Dr. Michael Walsh and Dr. Kathy Siminovitch.  Both doctors will speak on their respective research studies and will be available to answer any of your questions. Here are a few final details for next Saturday.  Dr. Siminovitch is now in urgent need of fresh blood cell samples from GPA-wegener’s and MPA patients.  From GPA & MPA patients only, she needs fresh blood cell samples, not DNA which most of us have already donated.  This means all GPA and MPA patients can re-donate!  In addition to the urgently needed GPA & MPA samples, she will also collect DNA samples from ALL vasculitis patients, so if you still have not donated your DNA for her genetic studies NOW IS THE TIME to consider doing it! Also, don’t forget that VFC has a special target to collect 100 DNA samples each from Behcet’s and Giant Cell Arteritis patients for advanced genetics study.

This is another opportunity for all vasculitis patients to donate your DNA and advance the cause of vasculitis genetics research. Please note: all GPA and MPA patients, who are donating fresh samples and have already donated their DNA previously, do need to complete the attached patient consent form.  Furthermore, on the back of the last sheet of the consent form please indicate: what “meds” (including your dosage), you are currently taking; when your last lab tests were done, and the complete contact info of the main Doctor who treats your condition, including full address, phone and fax numbers.  If you have never participated in any of Dr. Siminovitch’s studies you should complete both the attached consent form and patient information form and bring it with you.  Additional copies of both forms will be available from Dr. Siminovitch at the meeting.

We know it is difficult for many of you to be “ physically” with us in Cambridge (but we know, all of you are with us in spirit!), so we have decided to video both Doctor presentations and we expect to post this to our website in a relatively short time frame.  In addition, if you can’t make it to Cambridge or Toronto you can still participate in these studies remotely, but remember collecting lab samples during our “mass” collections at our meetings is, by far, the most cost effective way to collect patient samples.  Here are two alternative options: as an MPA or GPA patient, the urgently needed fresh blood samples need to be in the lab within 24 hours which is doable certainly within Canada, and maybe even from the USA.   The first way, and easiest, is to donate your sample on a planned visit to the Toronto vasculitis clinic, or even a planned visit with Robyn, Dr. Siminovitch’s study co-ordinator.  The second way is to courier your sample in, with advance arrangements made with Robyn. If you are a GCA or Behcet’s (BD), patient you can also contact Robyn to participate remotely.  Of course, some exceptions may apply to participating via remote labs, but hey, give it a try!  If you can’t make it to Cambridge, and for more info on if, and how, you can participate in Toronto, or remotely, please contact Robyn directly at: [email protected]

For next Saturday in Cambridge our lab draws start at 11:30AM, for your info here is our revised schedule:

11:00AM                               Registration and sign-in

11:30AM (until done)        Blood draws start for Dr. Siminovitch’s studies

11:45AM to 12:30PM         Lunch

12:30PM    to 1:00PM       Welcome, introduction and Dr. Siminovitch with Q&A

1:00 to 2:15PM                   Dr. Michael Walsh with Q&A.

2:30 to 3:45PM                  VFC Annual General Meeting

Although time is running out, you can register now, and/or return your VFC 2015 AGM reply, via email by Tuesday, April 14, 2015 before 8PM (eastern), to Garth James at:  [email protected]

If you have membership questions please contact: Carol Moller at 519 452-7011 or [email protected]

If you have questions regarding our meeting, speakers or Dr. Siminovitch’s meeting research please contact: Jon Stewart at 416 691-6500 or [email protected]

We look forward to seeing all of you on Saturday, April 18, 2015 at the Royal Canadian Legion, Branch 126, Upper Floor, 334 Westminster Drive, Cambridge Ontario.

Happy Spring and happy trails,

Jon Stewart

President

Vasculitis Patient form v7 22-Jul-14 (Clean)

Vasculitis Consent Form Revised 4-Aprt-14 (Clean)