Daniel Zlatin, Author at Waldenstrom's Macroglobulinemia Foundation of Canada

CORD Survey: The Impact of a Rare Disease + Feedback on a Canadian Strategy

2022-11-16T10:00:07-05:00

Do you have a rare disease? Are you a caregiver for a person with a rare disease? If you're reading this on the WMFC website, then the odds are that you answered "yes" to one of those questions! And so CORD, the Canadian Organization for Rare Disorders, needs your input on: The impact of your rare disease on you and your family, and Your perspectives on how Canadian health systems can improve access to rare disease medicines. They are running a survey for both patients and caregivers to gather your feedback. The second part of the survey, on policies around rare [...]

CORD Survey: The Impact of a Rare Disease + Feedback on a Canadian Strategy2022-11-16T10:00:07-05:00

The Québec Support Group: The Sharing of Difficulties and Successes

2022-11-13T17:50:47-05:00

A History of the Québec Support Group By Danielle Gagnon, Montreal Support Group co-leader and caregiver We first heard of Waldenstrom’s when my husband, Robert Perrault, was diagnosed in August 2019. It is always a shock when you hear the word cancer. We started looking on the web for information about the disease and found that WMFC had support groups in every province, except in Québec. We did not waste any time and in September 2019, went to the closest support group meeting in Ottawa. We were a bit nervous about what we would find out, but it was [...]

The Québec Support Group: The Sharing of Difficulties and Successes2022-11-13T17:50:47-05:00

Dr. MacDonald: From the origins of WM to treatments beyond BTKi

2022-11-03T15:40:07-04:00

Dr. David MacDonald of The Ottawa Hospital provided us with an extremely informative presentation at our National Zoom meeting on Oct. 26, 2022. One of the best presentations, done in layman's terms, covering a set of topics: How does WM originate in the body, and how does it relate to other lymphomas How have drugs been approved for WM in Canada How is WM treated in Canada ... including brief updates on clinical trials that Dr. MacDonald is involved in (and which we have covered in blog posts in the past): BRAWM nemtabrutinib Highly recommended viewing for anyone wanting a refresher [...]

Dr. MacDonald: From the origins of WM to treatments beyond BTKi2022-11-03T15:40:07-04:00

Got some time for the WMFC?

2022-10-20T14:15:27-04:00

As a Canadian Cancer Charity, for over 20 years we have relied entirely upon dedicated and passionate volunteers to help us offer support and education to WM patients and their families, as well as to raise money for research to ultimately find a cure for WM. To continue expanding this amazing story, WE NEED YOUR HELP! If you have ever considered volunteering for a charity and you have a few hours each week to spend helping our WM efforts, we would love to talk with you. Whatever your experience or time constraints, we can find you a rewarding opportunity. Specifically, we [...]

Got some time for the WMFC?2022-10-20T14:15:27-04:00

COVID-19 Resource Hub

2022-10-13T12:02:39-04:00

The Gastrointestinal Society has created a COVID-19 Resource Hub. Information about it says: “Everything you need to know about COVID-19, including information on symptoms, prevention, testing, treatments, and variants is available in one place at www.badgut.org/covid-19. The site includes active links to each province and territory so you can quickly learn your eligibility for vaccines, testing, and medications, as well as the availability of services in your area, no matter whether you have a gastrointestinal condition or not.” Of particular interest are: The page on Covid-19 prevention (https://badgut.org/covid-19/prevention/), which includes links to the web page of each province and territory for [...]

COVID-19 Resource Hub2022-10-13T12:02:39-04:00

Journal article: A Canadian Perspective on the Treatment of WM

2022-10-08T17:31:16-04:00

This journal article by a handful of researchers from across Canada, including our frequent contributor Dr. Christine Chen, provides an overview of treatment options for WM, and their usage in current (2022) Canadian WM treatment. No new research results are presented; the article is a summary of existing knowledge, and thus can be useful to those looking to refresh their knowledge about the various treatment options. Most useful to the lay reader is the treatment flowchart in section 4.1. Download of the .pdf of the article is available at https://www.mdpi.com/1718-7729/29/10/560 (look for the button "Download PDF")

Journal article: A Canadian Perspective on the Treatment of WM2022-10-08T17:31:16-04:00

Finding courage and calm in the face of cancer’s uncertainty

2022-10-02T16:14:10-04:00

As we know, every WMer is unique. Equally unique is the impact the disease has on their family and loved ones. In September, 2022, Maclean's published this look at two WM diagnoses, and the impact on their families. See https://www.macleans.ca/longforms/finding-courage-and-calm/.

Finding courage and calm in the face of cancer’s uncertainty2022-10-02T16:14:10-04:00

WMFC and LLSC Announce a WM-focussed Operating Grant

2022-09-13T16:55:57-04:00

The WMFC, in partnership with the Leukemia and Lymphoma Society of Canada (LLSC), is pleased to announce the availability of an Operating Grant for research into WM. An Operating Grant is a two-year grant designed to provide funding to research that may ultimately lead to a significant change in the understanding, diagnosis, or treatment of blood cancer -- in our case, specifically for WM. All the details are available at the LLSC website on Operating Grants, but the highlights of such an award are as follows: Available to researchers at Canadian institutions Funding is for up to $100,000 per year [...]

WMFC and LLSC Announce a WM-focussed Operating Grant2022-09-13T16:55:57-04:00

WM and DVT — One Member’s Cautionary Story

2022-08-20T20:51:43-04:00

Ed. note: Many of us need to go the Emergency department from time to time, for things not related to WM. During the discussion of our symptoms with the triage nurse, there is the inevitable request along the lines of, "Tell me about your medical history". Of course, we obediently mention that we have "Waldenstrom's Macroglobulinemia". They express puzzlement. We spell it for them; they type it into our medical record. Possibly correctly. We explain that it is an indolent form of non-Hodgkin Lymphoma. That they understand. But not all non-Hodgkin Lymphomas have the same implications, when it comes to diagnostic [...]

WM and DVT — One Member’s Cautionary Story2022-08-20T20:51:43-04:00

How many of us are there, anyway?

2022-07-10T16:45:24-04:00

How many WMers are there in Canada? And how do we know? The "urban myth" says "oh, there are about 150 people diagnosed with WM in Canada every year". But for some of us, this wasn't enough. We wanted to know. And it just wasn't enough to refer to the urban myth. The obvious place to look is, perhaps, the Canadian Cancer Society (the CCS). They publish an annual report containing extensive statistics on cancer in Canada. The latest one, for 2021, is an excellent reference. Unfortunately, while the CCS does a great job breaking down the various types of cancer, [...]

How many of us are there, anyway?2022-07-10T16:45:24-04:00

DRZ

About Daniel Zlatin