Daniel Zlatin – Waldenstrom's Macroglobulinemia Foundation of Canada

How Your Donations to the WMFC are Put to Work

2022-05-14T17:08:06-04:00

Did you know that over the past 5 years, the WMFC has committed over $750,000 to fund research for a cure and improved treatments for WM? Pretty darn good for an all-volunteer organization with so few patients having such a rare cancer. 80% of all WMFC donations go directly to WM Research! Research makes a difference. “Three years ago my whole world came crashing down when I was diagnosed with WM” says Anne. “Through the advocacy of the WMFC Toronto support group, I was connected with Dr. Berinstein about to open a new clinical trial. My participation in this trial changed [...]

How Your Donations to the WMFC are Put to Work2022-05-14T17:08:06-04:00

Research Month: Interim Report from Dr. Hunter

2022-04-24T11:18:42-04:00

Your donations to the WMFC are currently funding Dr. Zachary Hunter, of the Dana-Farber Cancer Institute in Boston, in a project entitled "Multiomic Analysis of DNA, RNA and Epigenomic Networks in WM". In support of our upcoming Research Month, he has provided us with an interim report. This comes in both a short form, and a long form. The long form is available here -- but be warned, it is more than 7 pages of very technical information and graphs. On the other hand, it provides fascinating insight into the technical challenges and depth of analysis that goes into modern genetic [...]

Research Month: Interim Report from Dr. Hunter2022-04-24T11:18:42-04:00

Paxlovid: Getting Hold of It

2022-04-25T18:09:30-04:00

As you all know, the WM community has many members who are immunocompromised. This can be for several reasons: they are on, or have recently been on, chemotherapy treatment for the disease (especially Rituxin / Rituximab) they are on BTK inhibitors, which also have the effect of reducing our ability to manufacture antibodies in response to vaccines (as has been reported) the disease itself has resulted in lowering IgA, IgG, and other protective mechanisms, as the clonal B-cells proliferate; even without being in active treatment, WMers can be prone to pneumonia and other diseases These ways of being immunocompromised can mean [...]

Paxlovid: Getting Hold of It2022-04-25T18:09:30-04:00

Covid-19 Antiviral Treatments: Availability

2022-04-11T16:06:41-04:00

Paxlovid is an oral anti-viral treatment, approved by Health Canada. It is used only once one has contracted Covid-19, and usage must begin within 5 days of symptom onset. We know that some provinces, for example Ontario, have published a web page outlining how its limited quantities will be used, and who to contact if you think you are eligible. Top of the list of eligible people are immunocompromised people over the age of 18. But we do not have information on Paxlovid availability in all provinces. Or the availability of other treatments, in all provinces. If you can help [...]

Covid-19 Antiviral Treatments: Availability2022-04-11T16:06:41-04:00

Help Promote Action on Rare Diseases!

2022-03-27T16:55:08-04:00

As WMers, we often talk about the challenges of getting access to new drugs, in Canada, to treat our rare diagnosis. The next step in promoting and taking action on rare diseases needs to be done now, and CORD, the Canadian Organization for Rare Disorders (https://www.raredisorders.ca/), is asking for everyone’s help. And they have made it easy for us to make our voices be heard! With the expected release of the Canadian Strategy for Drugs for Rare Diseases later this year including $500 million per year from the federal government, there is a once-in-a-lifetime opportunity for governments, health systems, industry, academia, [...]

Help Promote Action on Rare Diseases!2022-03-27T16:55:08-04:00

Paying for BTK Inhibitors in Canada

2022-03-24T17:03:18-04:00

BTK Inhibitor drugs such as Ibrutinib, Zanubrutinib, etc, are very good drugs for the treatment of WM, especially for relapsed and refractory WM. Unfortunately, unlike other drugs used in the treatment of WM, they are currently not generally funded by the Provinces for the treatment of WM, primarily because of their high cost. This is despite the fact that most of these drugs are approved by Health Canada for the treatment of WM. So, unlike other drugs used in the treatment of WM, paying for these drugs becomes an issue. We have addressed the question of "How does one manage the [...]

Paying for BTK Inhibitors in Canada2022-03-24T17:03:18-04:00

WMFC has a YouTube Channel!

2022-03-23T16:58:09-04:00

We have a YouTube channel! https://www.youtube.com/channel/UCYDcXKrk4Nedjj_RIz1B_NQ will take you there. This channel has collected all of the WMFC videos we’ve been able to find, into one place. This includes the collection of videos from our 2019 Ed Forum, and many recordings of Zoom meetings, both older and more recent, that featured a guest speaker. Future WMFC videos (those recordings of Zoom meetings that feature a guest speaker, and our next Ed Forum) will be put there, too. One thing to be aware of: if you are looking at some of our older posts on this website, and you click on a [...]

WMFC has a YouTube Channel!2022-03-23T16:58:09-04:00

BRAWM Trial Update from Dr. Neil Berinstein

2022-03-13T15:38:52-04:00

On Feb. 9th 2022, Dr. Neil Berinstein of the Sunnybrook Cancer Research Institute provided us with an update on the BRAWM trial. That trial combines the standard-of-care Bendamustine + Rituximab, but adds in a BTK inhibitor, Acalabrutinib. He also gave us an view of how Covid impacts WM patients. And there was time for Q&A on both topics. View the video here, on the WMFC YouTube channel.

BRAWM Trial Update from Dr. Neil Berinstein2022-03-13T15:38:52-04:00

Another Clinical Trial Available in Canada: Nemtabrutinib

2022-05-26T17:45:39-04:00

Nemtabrutinib (a.k.a. MK-1026 and ARQ 531) is a BTK inhibitor, but, similar to Pirtobrutinib (LOXO-305), has a reversible ("non-covalent") binding behaviour to the BTK site. (For more information on its chemistry, see this site.) An open-label phase 2 trial of Nemtabrutinib, including WM patients, is now recruiting at locations around the world. In particular, three (as of May 24/2022) Canadian locations are included: The Tom Baker Cancer Centre, Calgary, AB; Study co-ordinator is at (403) 521-3723 The Jewish General Hospital, Montreal, QC; Study co-ordinator is at (514) 340-8222, x24572 The Ottawa Hospital, Ottawa, ON; Study co-ordinator is at (613) 737-7700 (added [...]

Another Clinical Trial Available in Canada: Nemtabrutinib2022-05-26T17:45:39-04:00

News and Updates from your WMFC!

2022-02-04T17:58:05-05:00

February 2022: Thank you!! Calgary Ed Forum Upcoming National Zoom meeting! One member's experience with a cross-border clinical trial ... during a pandemic What's new on the web site? "Grand Rounds" Thank you!! To everyone who made our end of year appeal a great success … Thank you so much for supporting the WMFC with your donation. We raised almost $40,000 in the last few months of 2021. This is a huge accomplishment for our small and volunteer-led organization. There is no greater gift you can give, and every single dollar raised supports essential WMFC initiatives. Your support has a direct [...]

News and Updates from your WMFC!2022-02-04T17:58:05-05:00

DRZ

About Daniel Zlatin