Walk & Roll for Muscular Dystrophy Canada

680 CJOB is proud to support Muscular Dystrophy Canada to for their Walk & Roll event on June 17th , 2023!

We Walk or Roll

Join the Walk & Roll for MDC in your community! Come together with friends, families and community members to spread awareness, raise funds and have a great time forming new friendships. We hope to see you there!

Winnipeg

Event Date:  June 17, 2023
Event Time: 1:00pm
Location: Kildonan Park
2021 Main Street Winnipeg, MB R2V 2B9

Meet the Beard Family, Winnipeg Walk & Roll Ambassadors 2023

Charlie Beard, his wife Lynette, and their three children, Emery, Lanna and Liam live in Landmark, Manitoba and are excited to be ambassadors for the 2023 Walk & Roll for MDC.

When Charlie was 35, he was diagnosed with myotonic dystrophy Type 1 (DM1), after finding out that there were many cases of the disorder on the maternal side of his family.

As a child, Charlie experienced some of the cognitive symptoms of DM1, such as anxiety. In his teen years, he was active and enjoyed playing volleyball for his high school varsity team, but did often sleep for longer periods of time, which is also a common symptom of DM1.

In his 20’s, he began having digestive difficulties. Then, a traumatic work injury to his left hand, resulted in the loss of several fingers. When he began having hand weakness, he attributed it to the injury, even though the weakness was in both hands. By the time he entered his thirties, Charlie was living with increasing pain and fatigue. In 2022, he went on disability leave in an effort to improve his quality of life and reduce the pain.

Charlie’s experience of getting diagnosed was pretty straightforward as he had a strong family history of DM1. It took three months for the bloodwork to be analyzed, which felt very long! Once he was diagnosed, Lynette and Charlie requested a consult with the genetics team for their three children, Emery, Lanna, and Liam. Although the doctors did not recommend this testing, Charlie and Lynette’s goal has always been to be proactive – so they decided to have their children tested.

In March of 2022, six months after Charlie’s diagnosis, they got the results that Emery and Lanna also had DM1. Receiving this diagnosis provided the answer to quite a few questions that the family had throughout the years and they are incredibly thankful to be able to have this information.

Because DM1 affects almost every system in the body, all three family members have met with many specialists including respiratory, neurology, cardiology, and opthalmology. Charlie, Emery and Lanna have begun physiotherapy and have seen occupational theraprapists. Emery and Lanna received orthotics for times of high intensity activity to support their muscles and all three family members participate in sleep studies, as difficulty breathing during sleep is a common symptom of DM1. As a family, the Beard’s have also gone for family counselling to help process these diagnoses as a family.

Some challenges that Charlie has faced because of his neuromuscular disorder have been his ability to stand and work for long periods of time. He needs to be careful about how long he stands or walks, as this can cause pain. He also struggles with daytime sleepiness.

A positive experience that the family has had since receiving these diagnosis has been that their church family has rallied around them, providing both financial and emotional support.

The 2022 Walk & Roll for Muscular Dystrophy has also been a recent highlight! Last year, the family met at Assiniboine Park to walk, after completing their fundraising. Lynette says that the family felt so supported and like people cared about their situation.

As a family, Charlie, Lynette, Emery, Lanna and Liam are looking forward to another Walk & Roll this year. Please join them for Walk & Roll for MDC 2023 in Winnipeg, MB on June 17, 2023.