An active mother of three young children, Stephanie Christiansen Hall wants people to know she has ALS – but she wants everyone to know that her disease is only part of her story. Apart from living with ALS, Stephanie is – and has always been – a selfless person with a positive nature, a desire to help others, and an ability to push through, no matter what challenges she faces.

Raising awareness of ALS is the main reason Stephanie attends the Walk to End ALS.  “I can’t wait,” she says of the June 8 Ottawa event, at which she is excited and honoured to be speaking. “I think it’s really important to send a message out to the world – that we’re standing together and that we’re going to talk about ALS. We’re going to open the conversation.”

“I hope people will hear the strength in my voice and let that fill them,” she says. “I hope they find courage in themselves, whatever they are going through.” She says people often comment on how rare it is to have ALS, but in fact, there are 3,000 Canadians living with the disease on any given day. Since the average prognosis is only two to five years, ALS is less visible than some other terminal diseases people survive with for longer periods of time.

For Stephanie, the Walk to End ALS is also a tangible show of support for an entire community. “Showing up says, ‘I support people living with ALS, their loved ones, and I honour those who have passed,’” explains Stephanie. That sense of community helps people with ALS feel they are not alone. It is a source of comfort in the face of debilitating health challenges, financial concerns, emotional stress, and the reality of living with a terminal disease – and most of all, it sends a message of hope.

This will be Stephanie’s second time attending the Walk. She will be surrounded by her husband, three children, parents, siblings, members of her church community and her extended family of friends and supporters. She intends to complete half of the 5km walk along a beautiful riverside path in downtown Ottawa using her cane. She will complete the other half in her wheelchair with the help of her husband, Nick. “It’ll be amazing,” she says.

This year, Stephanie’s involvement is helping feed her sense of belonging. Although she is eagerly anticipating the day, she also acknowledges it can be hard knowing friends have passed away. Walking alongside bereaved families, she explains, is an important way to remember and honour loved ones who have died, and to celebrate a community determined to bring about an end to ALS.

Stephanie is grateful for every dollar raised at the Walk. “It makes a world of difference,” she says. She wants donors to know that investing in research will save lives in the future, and providing equipment today is already a “life-saver.” “I didn’t have to worry about finding the money for a power wheelchair so I could keep up with my children. We still go out to the park together. On a nice day, I take them to school. It means I can still enjoy the things I had before.” In addition to loaned equipment, Stephanie says ALS Canada is an invaluable source of information to help families anticipate some of the changes ahead including home renovations to accommodate restricted mobility once the symptoms of ALS progress.

Stephanie says that much of her positive attitude comes from the feeling of community spirit.  “I am so privileged,” she says. “I wouldn’t choose to have ALS, but those are the cards I’ve been dealt. And now, I don’t think you could pick a better community to be part of.”

 

The Walk to End ALS takes place in over 90 communities across Canada until September 2019. Register or donate to a Walk to End ALS near you at  www.walktoendals.ca .

Your fundraising efforts and generous donations support the best ALS research in the country and enable ALS Canada to provide community-based support to people and families living with the disease in Ontario. Donations for all Walk to End ALS events are being accepted until December 31, 2019.

Posted in: Events, Walk To End ALS