Spotlight on Erma Roung

Past caregiver, long-standing Multiple Myeloma March leader

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.

Erma Roung

Erma, how did Myeloma Canada come into your life?

My husband Ken was diagnosed with myeloma in March of 2010, and at that time we knew nothing about the disease. He fell through all the cracks in the medical system and unfortunately died shortly thereafter. He was diagnosed on March 31^st and two months later on May 31^st, he passed away.

How did your late husband’s myeloma impact your life?

When we weren't getting answers from doctors while Ken was being treated, my brother-in-law searched the web, found and obtained information from the Myeloma Canada website. After my husband died, I was very bitter; no one had given us any information at all, including his doctor.

I knew I had to do something positive to get awareness out to people, so I contacted Myeloma Canada and asked them what I could do. We discussed a few things and I decided that helping with the Myeloma March would create the most awareness. In 2010, the same year my husband passed away, we put together the first Myeloma March here in Windsor and ended up raising $50,000. My main objective 10 years ago was just to get awareness out to people so that they could find information and support.

In what ways has Myeloma Canada helped you through your myeloma journey as a past caregiver and as a March leader?

Helping with fundraising, organizing the Myeloma March each year is satisfying. I have met people through the walk and fundraising events which has helped me get over my resentment. The information available from Myeloma Canada, and the impact of new treatments, is rewarding to be part of.

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

I provide information to those who are newly diagnosed. We meet together and we tell our stories, and I help raise funds for research. We have raised close to $300,000 locally to date. By getting awareness out there and raising funds towards research that will continue to extend the lives of those going through myeloma and hopefully one day, lead to a cure.

As a past caregiver, is there anything you’d like to share with others in a caregiving role?

Advocate on behalf of your loved ones. Push for answers.

You’ve been an incredibly successful March leader for 10 years now. What advice would you like give to the myeloma community?

Anything is possible if we work together for a common goal.

What does the Myeloma Canada’s Multiple Myeloma March mean to you?

It's the satisfaction of bringing people together to let them know they are not alone, bringing awareness to the community, and providing some education on the disease.

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

Erma and Riley at the Windsor 2019 Multiple Myeloma March

Myeloma Canada has a huge impact on patients; they let them know they are not alone in this challenge. Over the last 10 years since I was first introduced to the organization, Myeloma Canada’s advancement of information, advocacy and their impact on new treatments has been positive…it’s such a better place today for patients and caregivers fighting through this disease. Life spans are expanding and living with myeloma is more doable.

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

I would wish for a cure in the foreseeable future. It’s very hard to watch a loved one diminish. It’s hard for the person going through it, and also hard for the person giving the care.

Thank you for your time and insights Erma, 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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