September 2021:

  • From the WMFC Editorial Board: What’s up with CAR T in Canada?
  • New items of interest on our Web site
  • In-person support group meetings not recommended yet
  • The US FDA catches up to Canada by approving Zanubrutinib
  • Launch of Two New Support Groups
  • Request for your WM Doctor’s name
  • Rob Murenbeeld Memorial Golf Tournament
  • Volunteers Needed

 

From the WMFC Editorial Board: What’s up with CAR T in Canada?
CAR T treatment is in the news everywhere.  How does it relate to WM?  And are there any CAR T trials going on in Canada?  Click here to check out our latest short article that gives you up-to-date Canadian information, in the context of what is happening elsewhere.

New items of interest on our Web site
Over the past couple of months, the Editorial Board has added to our website numerous new and very relevant articles to WMers regarding WM and its treatment, as well as news on Covid and Booster shots.  I have included a brief listing of just some of the topics below (with links for your convenience):

In-person support group meetings not recommended yet
The WMFC and IWMF Boards are constantly reviewing this issue.  We know how desperately a lot of Support Groups desire to get back to in-person meetings.  But given the dramatic effect of the 4th Wave of the Delta Virus, we strongly recommend to continue Zoom meetings into the foreseeable future, until our health experts recommend ways to safely resume these important meetings with an audience that can itself be immunocompromised.

The US FDA catches up to Canada by approving Zanubrutinib
As we reported back in March, Zanubrutinib (Brukinsa) was approved in Canada for the treatment of WM.  It is the second BTK inhibitor approved specifically for the treatment of WM, along with Ibrutinib.  The US FDA has now also approved Zanubrutinib for the treatment of adults with WM.  Approval was based upon the phase 3 Aspen trial with results published in Blood magazine in October 2020.  In Canada, Zanubrutinib is distributed and produced by BeiGene and is currently available on a compassionate basis.  For more on BTK Inhibitors in Canada, see this part of our page on Treatments for WM.

Launch of Two New Support Groups
The WMFC is very pleased to announce the launch of not one but two new WM Support Groups!

  • A support group for Manitoba and its neighbours, including Saskatchewan and Northwestern Ontario:  Called “Manitoba and Friends”, their first meeting was held by Zoom on September 22, but they hope to hold in-person meetings as soon as practical and safe.  The Support Group Leaders are Elsebeth Hansen-Kriening and Vivian Kachanoski.
  • A support group for residents around the eastern end of Lake Ontario:  Known as the “Oakville / Niagara Falls” support group, their first meeting will be held Oct. 20th.  The Support Group Leaders are Margaret Seliskar and Lisa Dickie.

Should you wish to join either group or have any questions, please contact one of the leaders at their emails, provided via the links above.

We wish both groups all the best in their desire to help their fellow WMers.

Request for your WM Doctor’s name
The WMFC is preparing a listing of as many doctors as we can get who are currently treating WM patients in Canada.  We will be providing them a webinar featuring leading Canadian and US WM researchers, to provide up-to-date information on diagnosis and treatment of WM in this ever-changing field.  To support this, over the next few weeks, you may be receiving an email from the WMFC, requesting your WM Doctor’s name, Hospital, and email address (if known).  This information will be kept completely confidential.

Rob Murenbeeld Memorial Golf Tournament
Rob Murenbeeld was a WM patient who passed away 11 years ago.  The Murenbeeld family has continued to be very good friends and supporters of the WMFC.  This year on Saturday, May 28, the 10th Annual Rob Murenbeeld Golf Tournament was held.  The 2020 and 2021 turnouts have been slightly less than previous years because of the pandemic.  Nonetheless, 20 golfers including, Rob’s brother, Charles, attended to remember and celebrate Rob’s life.

The WMFC is extremely touched and pleased with this annual event and admire the organizer, Geoff Morgan, and his tenacity to keep Rob’s memory and this annual event going, to raise funds for WM research, and to spread the word about WM.

Volunteers Needed
We need your help!  The WMFC is an all-volunteer, non-profit Foundation with the mission of Support, Education and Research funding for WM.  We have two specific positions where we have need of volunteers, right now:

  • Director of Fundraising:  This position would oversee the fundraising activities of the WMFC, including managing our two annual email fund raising campaigns and assisting WMFC sponsored member events.  This could ultimately be a Board position.  Prior experience in fundraising activities for non-profits would be beneficial, but not necessary.
  • Communications Volunteer:  We need someone with skills for designing and editing  Newsletters, dealing with social media, assisting the WMFC in promoting special events, such as Education Forums, and generally marketing the WMFC Foundation.

If you have an interest in either of these positions, please contact Cameron Fraser at cam.fraser@wmfc.ca.   Become part of the WM team and make a difference.

Cam Fraser
WMFC Board Chair