Spotlight on Robin Sully

Person living with myeloma, strong advocate,

support group leader

(Ottawa, ON)

Editor’s Note : In celebration of our 15 ^th Anniversary, the Spotlight section of Myeloma Matters has changed slightly. This year, our Spotlight Stars have been asked to share their stories alongside their relationship and involvement with Myeloma Canada. We hope you enjoy meeting our 2020 Spotlight Stars and that the new format provides you with information you didn’t know before.

To all of you who have shared your stories in the past, and those of you who continue to do so today, we are indebted...you are an inspiration.

Robin, how did Myeloma Canada come into your life?

I learned about Myeloma Canada from the Ottawa-Gatineau support group, shortly after being diagnosed in 2012. I’m interested in advocacy, and I thought while I’m healthy,

I would like to participate.

Robin Sully

How is myeloma impacting your life?

It has impacted all aspects of my life. I am a lawyer. Prior to my diagnosis I travelled extensively, working with partners in developing countries and countries in transition, supporting justice reform and access to justice initiatives. Although I was passionate about the work, with myeloma I was unable to continue.

I also have been forced to reconsider my physical activities. We have horses and I can no longer ride. Now I walk. Not particularly exciting!

Perhaps most frustrating has been dealing with “chemo brain”. It’s definitely affected my cognitive capacity.

It takes me much longer to write and remembering anything has become a challenge. Humorous actually! While I blame this on the side effects of the drugs, I am thankful to have them! I was initially given 3 years to live and am now in my 8 ^th year. The life-giving miracle of drugs!

In what ways has Myeloma Canada helped you through your myeloma journey?

As an individual, I think it’s important to try and take control of your disease. You really need to be able to advocate for yourself either directly or with the support of your caregiver and family. And access to information is critical to empower and support you.

Myeloma Canada provides and facilitates the exchange of vital information related to the disease. Personally, having access to Myeloma Canada’s network of knowledge has been an incredible help.

Their website, information sessions and more recently, webinars, have provided access to the most recent developments in the treatment of the disease. Myeloma Canada’s encouragement and support of “community”, bringing together clinicians and patients from across Canada through its annual meetings, the Scientific Roundtable and leaders’ summits, and facilitating research, dialogue and exchange really has been invaluable, empowering and facilitating in my engagement. Their support of research and the establishment of the MCRN has been critically important to the treatment of our disease.

Robin on a camel while on vacation

Their work advocating for patients federally and provincially has expanded awareness of the disease and helped ensure that we have timely access to more effective treatments. As a result of Myeloma Canada’s initiatives, my treatment options have expanded moving forward…my journey will continue! And for this I am very thankful!

How do you contribute to advancing the cause of those affected by myeloma?

Through my experience with myeloma I have come to recognize the critical importance of strengthening the patient’s voice to advance myeloma treatment, advocacy and research . To that end, I am involved at the local level as Co-chair of the Ottawa-Gatineau Myeloma Community Network, a support group which encourages hope and works to empower patients through education, advocacy and mutual support.

I'm also a member of the organizing committee of our annual Ottawa-Gatineau Myeloma Walk: Steps to a Cure, raising money for myeloma research locally and nationally, and am Chair of the Ontario Advocacy Committee which brings together myeloma patients and caregivers from across Ontario to work on advocacy initiatives. The Committee has been actively engaged at the provincial level in promoting awareness, accessing funding for treatments and supporting the development of a diagnostic protocol. I also sit on Myeloma Canada’s National Advocacy Committee and am a member of the Steering Committee of the Priority Setting Partnership, an initiative sponsored by Myeloma Canada to identify research priorities of clinicians and patients which are not currently being addressed.

Why do you feel Myeloma Canada is the best "medium" through which to advocate for those affected by myeloma?

Myeloma is a rare disease. With relatively few patients, we are really fortunate to have Myeloma Canada, a national organization, to bring us together, to support the community, to co-ordinate activities, to ensure that patients and caregivers have the information, tools and support they need, and to provide a united voice to advocate on our behalf for access to treatments. With Myeloma Canada’s support we are small but mighty!

If you had one wish for patients and their loves ones, what would it be?

To have hope and, while of course a cure would be wonderful, I would wish that they live long and well with the disease!

Thank you for your time and insights Robin, and all you do alongside Myeloma Canada.

Thank you!

Editor’s Note: To donate to Myeloma Canada, please visit www.myeloma.ca or call us toll-free at 1-888-798-5771 .

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