A Tribute to Marsha McWhinnie

Co-founder and CASN President 2008-2022.

Marsha McwhinnieMarsha McWhinnie and Jodi Dewar co-founded the Canadian Amyloidosis Support Network (CASN) in 2008. Marsha was an amyloidosis patient, having been diagnosed with Primary Light Chain (AL) Amyloidosis and Multiple Myeloma in 2000 at the age of 55. She was a pharmacist, and her education in pharmacy provided her the background to support CASN’s advocacy work. Whether she was providing supportive information to patients and caregivers, or engaging with the medical and research communities, Marsha’s thorough understanding of the disease allowed her to effectively communicate with everyone.

Marsha participated and served on the board of Multiple Myeloma Canada from 2001 to 2007, attending the patient support meetings in Toronto, supporting the MMC Fundraisers, and ensuring there were Amyloidosis breakout groups at all Multiple Myeloma meetings across Canada.

In 2008, Marsha retired from her position at MMC and dedicated herself to launching and supporting  the CASN. She was active in the role of president from the onset. Marsha established a toll-free support line which she answered personally; she launched the initial website to spread awareness and give Canadian patients and caregivers a place to find credible information and the opportunity to connect. Marsha organized in-person meetings for patients and caregivers of all types of Amyloidosis, all across Canada. The meetings gave patients the opportunity to connect with each other, to share their experience, to learn from each other. Healthcare professionals gave informative presentations at the meetings, to share relevant topics such as Coping with living with Amyloidosis, and Understanding your emotional response to your diagnosis of Amyloidosis.

Marsha also kept current on the advances in diagnosis and availability of treatments, and this information was shared with the Amyloidosis patients and caregivers who reached out to CASN. In 2011 a CASN Facebook group was created, allowing patients, caregivers and anyone interested in Amyloidosis the ability to connect with each other as well as providing an avenue for news of treatments and drugs to be shared.

Marsha McwhinnieFrom 2008-2022, Marsha successfully ran the CASN with support from her husband, Jim, and the organization’s many volunteers. Multiple Myeloma Canada provided valuable support to CASN, providing the ability for CASN to integrate with them at MMC meetings. This allowed CASN to provide the AL Amyloidosis patients access to the information and treatments available to them from MMC. CASN participated in the large fundraising events of MMC, which helped CASN to gain visibility in the AL patient and caregiver community.

Marsha was dedicated to ensuring that all Amyloidosis patients and caregivers could find support in Canada, and to that end, she began to grow the support team at CASN. Marsha provided support to Anne Marie Carr who has set up the organization HAC/TAC for TTR patients; Keith Dares from Nova Scotia became a CASN rep for the Atlantic region, as well as the international rep for CASN’s involvement in the global amyloidosis community. She was determined to also provide information to the French-speaking population and made in-roads in the Quebec region to begin this expansion.

Thanks to a stem-cell transplant shortly after her initial diagnosis in 2000, Marsha enjoyed remission from Amyloidosis until 2018. When the disease returned in 2018, she was treated with a new combination of drugs until 2022, when she passed away on August 21st.

Marsha was brave, kind and always positive. If she could, she would remind us how far we have come with earlier diagnoses, better treatments, and better understanding of the many forms of this disease.  She survived 22 years with this debilitating disease, but didn’t allow Amyloidosis to affect her positivity or her caring nature. Her beautiful smile will be missed by all.