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Racing for memories

Racing for memories

Recently, my family has joined the unfortunate ranks of those who have been impacted by Alzheimer’s disease. My mom started showing early signs of the disease a few years ago, and it has slowly and stubbornly progressed ever since. The toll that Alzheimer’s is taking on my mom is obvious and devastating. Less obvious, but just as significant, is the impact it is having on my dad. As my mom’s primary caregiver, it’s been said that my dad must ride the world’s tallest, fastest and scariest emotional roller coaster each and every day. Sadly, in my observation, this is absolutely true.

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Matthew Walks to honour the memory of his beloved Oma

Matthew Walks to honour the memory of his beloved Oma

Matthew Vorstermans and his grandmother had a very special bond.

“My Oma lived in Pittsburgh during most of her life and I only saw her about once or twice a year,” Matthew explains. “Despite the distance between us, we maintained a great relationship. We wrote letters to each other and talked on the phone all the time. There was never a time where we’ve held a grudge or anything; we’ve always gotten along.”

Matthew was born with Cerebral Palsy, and sites his Oma as a great role model and support as he grew up. “She didn’t care that I had a disability. She was proud to have a grandson—before me she had only had granddaughters. The fact that I am disabled, she was indifferent to that. She said, ‘I finally have a grandson and I love that.’”

“All my life, Oma had always been right there to give me comfort, reassurance and companionship.”

The signs of dementia started to present themselves slowly. She struggled to recall details about her life, and her own family. That’s when Matthew decided to reach out to the Alzheimer Society, to help him understand the disease that was impacting his grandmother.

It was not long before the disease began to take a toll on his grandmother’s short term memory. Eventually she didn’t remember Matthew at all. That, along with the distance, took a toll on Matthew.

“As the disease progressed, in the last six years of her life, she moved to Nova Scotia. I wasn’t able to see her as frequently. I felt guilty. It was very painful.”

“I wanted to do something about the situation.”

Matthew contemplated how he could turn the feelings of sadness and helplessness into positive action.

“It took me a while to arrive at the conclusion, but I finally decided that as much as I’d like to be with and comfort Oma, I can’t, but I can do that for somebody else.”

Matthew contacted the Alzheimer Society of Simcoe County and began to volunteer, fundraise, and actively seek out opportunities to speak about his experiences. He began participating in the Walk for Alzheimer’s in 2007. Since then, he’s single-handedly fundraised $27, 815.36 for the Alzheimer Society.

Matthew Vorstermans at the Walk in 2015 “I’ve met a lot of people, particularly at the Walk for Alzheimer’s, who tell me that they like what I’m doing. They may have lost their husband or wife only a couple months ago, which is why they’re walking. I think it’s important to realize that, as painful as it is, you don’t have to wait until your own personal experience is over. You can turn that pain into positive action whenever you feel like it. It may even be therapeutic for you. It certainly was for me.”

“It is never too early, or too late to get involved.”

Are you ready to start fundraising for the Walk for Alzheimer’s? Join the Walk for Alzheimer’s today!

DementiaHack 2017: Making a difference with technology

DementiaHack 2017: Making a difference with technology

On March 4th, the doors opened bright and early at MaRs Discovery District for DementiaHack 2017. Throughout the morning, registrants trickled in, setting up their computers and discussing their plans for the upcoming 36 hour-long event. An annual event hosted by Hackernest, Dementia Hack is a competition to create innovative technology to help people with dementia, Alzheimer’s disease and other neuro-degenerative diseases. With over 300 developers gathered together to compete, the room was buzzing with eager participants, discussing and preparing their projects.

Opening remarks were led by Jordan Banks (Facebook Canada) followed by Mayor John Tory, Gerry Gallagher (Public Health Agency of Canada) and Kevin McGurgin (Dementia Hack). Each speaker noted how inspiring it was to see so many young and bright individuals working together to help people with dementia and their caregivers. The winners of the competition would receive a cash prize of $100,000 to develop their technology, but it wouldn’t just be them who won. Today, 564,000 Canadians are living with dementia, and even more people worldwide. With the help of the hard work of the developers at this event, many more resources and tools would be developed that could make a huge impact on the lives of people with dementia.

Pictured Above: Mayor John Tory speaking at opening remarks

At 10:30 am, the competition began, and each team started working on their projects. Around the room, were mentors from various backgrounds of expertise in the fields of dementia, health services and research. Team members approached mentors throughout the day to ask for their expert opinions on the design of their projects. Amongst the group of mentors, were Phyllis Fehr and Agnes Houston, who brought vital perspectives to each group. Phyllis and Agnes are both diagnosed with dementia and are prominent advocates for people with dementia and their caregivers.

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Pictured above: Agnes Houston (far left), and Phyllis Fehr (second left), advising a team at the event
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Pictured above: Developers at work on their application for the competition

The next day, the judges evaluated each project to determine who would take home the grand prize for the competition. One of the judges, Lisa Salapatek (Chief Program and Public Policy Officer at the Alzheimer Society of Ontario), spoke about the event and projects submitted:

“I had the honour of being a mentor and judge for the Family Caregiver Challenge set.  It turned out to be the most popular category with 20 teams competing, and their solutions and presentations were nothing short of amazing, ranging from in-home artificial intelligence and sensor systems to reduce safety concerns, to virtual scrapbooks and storytelling tools, to uber-inspired apps to help families access the support they need on demand.   There were long debates as the judges for each challenge set came together to come to come to a consensus on which teams would move on to the finals.”

After the judges had all met, the grand-prize winner of the competition was announced: Team Momentum, for their application, MemoApp. The application works by passively collecting and analyzing data about the person with dementia through natural voice recording, to help them and their caregiver better track the progression of their dementia, and to gather data for researchers to better understand the progression of dementia. The runner-ups in the competition were the applications: Bright Guide, Rescue and ConnectDem.

We look forward to seeing how these incredible applications will develop and what new and innovative ideas will be brought to next year’s Dementia Hack!

Bringing the Ontario Dementia Strategy to the Forefront at AAIC 2016

Bringing the Ontario Dementia Strategy to the Forefront at AAIC 2016

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The Alzheimer’s Association International Conference (AAIC) 2016 was a huge success with over 5,000 attendees representing more than 70 countries! A forum to discuss the latest in dementia related research, the annual (and largest worldwide) conference dedicated to Alzheimer’s disease and other dementia’s took place in our very own, Toronto, Ontario from July 22nd to 28th, 2016.

The Alzheimer Society of Ontario, with our partners at the Ontario Brain Institute, hosted a tour of the Canadian pavilion during AAIC 2016. The tour was an opportunity for us to showcase Canadian and, particularly, Ontario research and to build momentum for the Ontario Dementia Strategy with key decision makers and political influencers in attendance, such as Dipika Damerla, the minister responsible for Seniors Affairs, as well as representatives from the Ontario Ministry of Health and Long-Term Care. With the presence of Senator Art Eggleton, Deputy Chair of the Senate Committee of Social Affairs, Science and Technology, the tour also served to increase awareness for the need for a National Dementia Strategy. The Ontario Dementia Strategy will serve to help communities across Ontario affected by dementia, and the presence of so many influencers is a great benefit to raising awareness for this important initiative.

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Overall, both the conference and the Canadian pavilion tour had a great turnout and were very well received by all attendees. It was wonderful to see so many interested in learning more about the issue of dementia and some of the substantial work and progress in the field being made right here in Ontario and across Canada. This is a big stride towards greater knowledge, understanding, and initiatives in support of people living with, and affected by, dementia. We are so proud of the Canadian and Ontario research presence at this conference, as well as the strong public interest in dementia.

We encourage you to continue the conversation about dementia and advocate for a Dementia Strategy to help support your fellow Ontarians living with and affected by Alzheimer’s disease and other dementias. You can become a Champion for Dementia by contacting me at lrettinger@alzheimeront.org.

Want to learn more about the Ontario Dementia Strategy? Check out our website here.

Sharing a cup of support

Sharing a cup of support

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Holly Kotowich and Penny Leclair, employees at Pullan Kammerloch Frohlinger Lawyers, have hosted Coffee Break® events at their workplace since 2007. “We host a Coffee Break event every year because we have staff and employers who deal with Alzheimer’s disease. Every year, it seems we learn somebody close to us has dealt with Alzheimer’s,” says Holly.

Coffee Break events can be hosted at your workplace, home, school or anywhere you can serve coffee. Holly says hosting a Coffee Break increases awareness about Alzheimer’s disease and other dementias in her workplace. And better yet, it’s so easy to do!

Holly and Penny take over the office’s lunch room table on their event day, and set up coffee, dainties and donation boxes. “We ask a couple people for assistance and a lot of them help with baking. We have everything set up all day, and the event just runs itself,” says Holly.

The Alzheimer Society sets you up with a Coffee Break® kit that includes posters, coasters, a donation box, event tips, coffee cup cut-outs and more. “People here love the coffee cup cut-outs that recognize their donation,” says Holly. “We stick them up on the wall, and they love to write their names on them. Kids aren’t the only ones who like that stuff!”

This fall, make your coffee count by hosting an Alzheimer Coffee Break! Visit alzheimercoffeebreak.ca

Coffee Break® brings the community together

Coffee Break® brings the community together

Verna Mowat

For the past few years, Verna Mowat has been hosting a Coffee Break® event on her family farm in the Westman region of Manitoba. Despite wind and rain, people in the community venture down the gravel road to Verna’s farm, where a smile and a warm cup of coffee are waiting for each Coffee Break guest.

“Lots of people from the community all come out – from Cypress, Glenboro, even neighbours down the road. I think we had 35 people last year,” says Verna.

Running with the mantra that a Coffee Break event can be as big or as small as you like, Verna goes all out in getting everyone involved. She makes the most out of the Coffee Break event kit (supplied by the Alzheimer Society) by encouraging people to autograph her Coffee Break poster. Many of her guests love this gesture as it gives them an opportunity to write a personal message about who they’re supporting.

Verna’s dedication is born out of her desire to help make a difference in the fight against dementia. Her mother lived with it for 19 years and her sister is currently going through the mid-stage of Alzheimer’s disease. Verna has seen the effects first hand and is concerned about the toll it takes on families.

In addition to raising money through hosting a Coffee Break event, Verna sells home-made pottery pins at craft markets in her community. Contributors like her are integral to ensuring the Alzheimer Society is able to support those affected by dementia. We thank her sincerely for everything she has done.

This fall, make your coffee count by hosting an Alzheimer Coffee Break! Visit alzheimercoffeebreak.ca

Etching memories in stone

Etching memories in stone

As CEO of the Alzheimer Society of Windsor-Essex County, I am constantly reminded of the impact of dementia on the person with the disease and the families who care for them and grieve when they pass away.

Sally and Ted Lindsay - Groundbreaking
Sally and former NHL player Ted Lindsay

I was so pleased in 2006 when our Society decided to create a granite Monument of Memories in beautiful Jackson Park for our 25th anniversary to remember all those in our community who have lived with dementia. We offered the opportunity to anyone in the community to have the names of friends and family engraved on the monument as a permanent memorial. We charge a fee for the engraving and funds raised from Monument of Memories stays in Windsor-Essex to support the current programs and services we offer to people living with dementia in our community.

The response has been incredible with the whole community rallying behind the effort. Local business, labour groups, media, former NHL player Ted Lindsay, whose sister had dementia,  and local families – all impacted by the disease – all contributed. Over 250 people attended our unveiling ceremony in 2008.

We do the engravings once a year and continue to have a demand for spots on the monument.

It’s important to remember and be remembered. While we don’t have a cure yet, the Monument of Memories allows us to remember those who have passed away, and look after people now living with dementia and their caregivers.

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If you would like to have a name engraved on the Monument, visit our website.

SallyFinal1-e1390614737179-300x240Sally Bennett-Olczak

Chief Executive Officer

Alzheimer Society of Windsor-Essex

My run for Alzheimer research

My run for Alzheimer research

Chris Dennis is the CEO of the Alzheimer Society of Ontario.

Even though I ran half a dozen marathons in my youth, 20 years on preparing for number seven wasn’t as easy as I thought. Since I received my son’s ‘Christmas gift,’ which entailed signing us both up for the Ottawa Marathon six months down the road, I have trained through rain and snow. And then, just to add a little pressure, I decided to turn my run into a fundraiser for Alzheimer’s disease research.

Why have one challenge when you can have two?

There have been bumps along the way. In addition to the coldest February on record, my doctor diagnosed me with bronchitis a week before the race. But with a puffer and some meds, he sent me on my way. I was ready..err sort of.

And with so many people rallying behind my fundraising effort, I more than doubled my goal and raised $13,000. Expectations were high and I didn’t want to let everyone down.

On May 24, I ran my marathon. It was gruelling and a lot slower since the last time I completed one. Having never cramped up in my entire life, I got my first at the 13 km mark. Such fun! Four hours on the pavement is a lot more difficult than the three I used to clock in days past. And my son beat my time by 40 minutes, leaving no doubt that the torch has been passed.

I ran my race but will stick to 10 kilometre races for the future. But it’s an experience I won’t soon forget.

ASO Marathon Chris DennisChris Dennis

CEO, the Alzheimer Society of Ontario

Photos from #SeedsofHope day

Photos from #SeedsofHope day

On May 16th, over 1200 people across Ontario planted #SeedsofHope for a world without Alzheimer’s disease. Here are some photos from the day.

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Our youngest #SeedsofHope participant
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Denyse Newton, Executive Director of the Alzheimer Society of Durham Region, plants her #SeedsofHope
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Courtney planted for Papa Ed
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EJ Harries Baden planted for her Great Grandfather
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Rose planted in honour of her Oma Trien The.

On May 16, I’m planting hope for a world without Alzheimer’s

On May 16, I’m planting hope for a world without Alzheimer’s

Every spring, I can’t wait to get my trowel in hand and bring my garden back to life again. It’s a ritual of rebirth that allows me to put even the worst of winters behind me. And it seems as if this interest has finally aligned with another passion: creating a world without Alzheimer’s disease or another dementia.

That’s what makes me so excited about our campaign. On May 16, we are encouraging Ontarians to plant Forget Me Not seeds.  Forget Me Nots are the official flower of the Alzheimer Society. They work great in pots or groundcover and come back year after year. But most importantly, we want them to become a symbol of hope for those affected by the disease.

Over 1,000 Ontarians are participating in this year’s campaign! Our community of hope is growing and I couldn’t be more pleased. People are rallying behind Ontarians affected by Alzheimer’s disease.

If you’re planting your Forget Me Not seeds on Saturday in hopes of a world with Alzheimer’s, consider another way you can help make that happen: a planned gift. And did you know that

there are ways to donate that would help you and your family at the same time? You can reduce taxes now or increase your retirement income or even leave more money in your estate through a legacy gift.

We have created an Estate Planning Guide and Workbook plus some helpful tools that we would be happy to send to you. Feel free to contact me (cbradley@alzheimeront.org or 416 847 8913) if you want a free Estate Planning Guide or if you have more questions.

IMG_4846 (edited)Colleen Bradley

Development Officer, Gift & Estate Planning