Impact Newsletter - April 2018

National Highlights

 

Arthritis Society Applauds 2018 Federal Budget

The Arthritis Society applauds the federal government for coming forward with a strong budget that respects the needs of people living with arthritis. Arthritis is Canada’s most prevalent chronic health condition, affecting over 6 million Canadians. It strikes people of every age, from infants to adults, and there is no cure.

With the new budget, the federal government takes a bold step towards reasserting Canada’s place as a world leader in cutting-edge scientific research. As part of a $4 billion overall commitment to research, the budget sets aside $354.7 million over five years ($90.1 million per year ongoing) to the Canadian Institutes of Health Research (CIHR).

After more than a decade of declining research investment, this infusion of research dollars will help develop and retain our brightest young scientific minds, and in turn spur innovation that will help bring forward novel solutions to long-standing issues of personal and public health.

The government is also taking an important step towards creating a national pharmacare strategy by creating an advisory council on implementation – an initiative for which we have been a strong advocate. Pharmacare has the potential to be hugely impactful for Canadians living with chronic disease such as arthritis, where treatment costs can be prohibitive and can last a lifetime.

We will continue to advocate strongly to ensure that the pharmacare initiative is driven by patient needs, moves forward in a timely fashion, is supported with adequate resources, and balances affordability with availability of a range of treatment options to meet individual needs.

The budget announcement also offers exemption from the proposed cannabis excise tax for certain low-THC medical cannabis oils and pharmaceutical products.

While this is good news for many people who rely on these products to help manage their arthritis symptoms, it only partly addresses affordability concerns. The government missed the opportunity to also remove the punitive sales tax on medical cannabis: medical cannabis is the only prescription medication in Canada subjected to sales tax.

We remain hopeful that a portion of the research funding announced today can help address long-standing gaps in our understanding of medical cannabis, and create an evidence base that will give patients and physicians the answers they need to make informed treatment decisions. This would also have the potential to benefit the government’s response to the opioid crisis, another feature of this year’s budget.

While the government brought forward a number of initiatives and funding to address the urgency of the opioid crisis, we had hoped to see a targeted research investment aimed at developing and validating pain management alternatives and making them more available. Hopefully, some of the research conducted under the government’s innovation strategy can help to tackle this intractable problem.

 

 

Biologics and Biosimilars for the Treatment of Inflammatory Arthritis

Biologics and Biosimilars for the Treatment of Inflammatory ArthritisFor many people living with inflammatory forms of arthritis, biologic drugs can offer the hope for significantly improved disease management, reduced symptoms, and better quality of life. But these biologic treatments are complex, and can be confusing to understand. What are they? How do they work? What do you need to know?

Whether you’re new to biologics, or exploring a switch in medication, you probably have questions. Find answers with our new online resource!

Learn More at arthritis.ca/biologic

 

 

Need for consumer reviewers

We are currently looking for people living with arthritis to participate as volunteer members in our Online Consumer Panels. These panels give you the opportunity to share your unique knowledge and feedback on the Arthritis Society's educational programs and activities. Volunteers can expect to be contacted 3-4 times per year, via email, and will be expected to provide feedback.

For more information, or to apply, please visit: https://bit.ly/2sGSUrN


 

Alberta

Aussie Pain Specialist to Present at May 7 Webcast Forum

Lorimer Moseley, PhD, of the University of South AustraliaA leading pain expert from Australia will discuss the science behind chronic pain at a free Webcast Forum offered by the Arthritis Society in May.

Lorimer Moseley, PhD, of the University of South Australia is a professor, author, international speaker and TEDx Talk presenter. He will be the keynote speaker at the Amazing Pain Facts that will Change Your Life Forum Monday, May 7 from 6:30 p.m. to 8:30 p.m. local time at Mac Hall, University of Calgary. It will also be live streamed to an online audience.

“This is a remarkable opportunity for people to hear one of the world’s leading experts on pain. I think the seats in Calgary will fill very quickly, which is why we are also making it available online,” said Shirley Philips, Executive Director of The Arthritis Society Prairie Region.

“We are collaborating with the Calgary Pain Education Foundation and the University of Calgary’s Continuing Medical Education Office, who are bringing Professor Moseley here for a conference. We’re grateful that he will speak to our arthritis community about pain.”

Joining him are Terry Kane, Physiotherapist, and Dr. Al-Noor Mawani, Clinical Psychologist. The MC will be Dr. Ray Bhardwaj, CBC Radio health contributor. A panel discussion and audience Q&A will follow.

This event is made possible through the generous support of Alberta Blue Cross.

Amazing Pain Facts That Can Change Your Life

DATE: Monday, May 7, 2018
TIME: 6:30-8:30 pm MDT/CST • 7:30-9:30 pm CDT
LIVE LOCATION: MacEwan Conference and Event Centre, University of Calgary
ONLINE VIEWING: Webcast link will be emailed to pre-registered attendees
REGISTRATION: https://arthritissocietypainforum.eventbrite.ca


 

Manitoba

Manitoba’s First Childhood Arthritis Camp July 16 to 20, 2018

Manitoba’s First Childhood Arthritis CampThe Arthritis Society is now taking registrations for its first annual summer camp for children with arthritis.

Hosted at BB Camp at Lake of the Woods, just a few hours east of Winnipeg, this exciting new camp is open to children in Manitoba and northwestern Ontario with a confirmed diagnosis of arthritis.

“Camp will give these kids a memorable summer experience, despite medical issues or physical limitations. The trained counselors and medical staff are sensitive to the children’s unique needs,” said Allison Kirkland, Education and Services Coordinator for the Prairie Region.

This is the sixth such camp offered Nationally for children, where they can share all the fun activities that campers enjoy and meet other kids with similar challenges.

“These kids can often feel alone, but camp helps lessen those feelings of isolation,” she said.

Registration fees are $100 per camper thanks to donations and the Faces of Childhood Arthritis Luncheon fundraising event, held March 9 in Winnipeg.

Guests had the opportunity to fund a specific camp need with their donations. Items included the cost of a bus from Winnipeg to Kenora, arts and crafts supplies, subsidizing a child’s full registration fee, or providing a child’s camp kit with t-shirt, hat and flashlight.

“It was a resounding success. People loved knowing that their donations were going to help these kids in a tangible way,” said Donna Wills, Regional Manager of the Arthritis Society in Manitoba.

Camp registration is on-going. Families that must travel can apply for bursaries through the Arthritis Society.


 

Ontario

Rotary Club of Toronto Charitable Foundation making significant contributions to Childhood Arthritis

Although arthritis is widely considered an “old person’s disease,” over 24,000 of those affected are under 18. Affecting 3 in every 1,000 children and youth.

A normal day for a child with arthritis may include, excruciating pain, stigma and feelings of isolation and depression, with effects that can devastate entire families, especially over time. Because even moving can be painful, these children and youth are considerably less active than their peers, which can lead to weakened muscles, decreased bone mass, and disability in adulthood. Simply put, arthritis robs children of their childhood.

School in particular presents numerous challenges, one of which is that traditional backpacks can put significant strain on the joints of children and youth affected, leading to discomfort and pain and increasing the difficulty of coping with arthritis at school.

The Childhood Arthritis Backpack Program helps newly diagnosed children and their families learn to manage arthritis. Helpful resources and tips are delivered in a backpack that’s specially designed to reduce strain on joints.

Going to camp is the highlight of a child’s year. Unfortunately, those with childhood arthritis are often excluded from traditional camps because they do not have the facilities, knowledgeable, medical staff or suitable activities to accommodate these children’s needs.

Thanks to The Rotary Club of Toronto, 40 newly diagnosed children will receive backpacks. filled with tools & resources to help them thrive every day. Forty campers’ cabins will also be equipped with vital first-aid kits to help ensure that all medical needs are covered.

The backpack and camp programs help provide an escape from the isolation of living with a chronic disease and build confidence, independence, and, in the case of camp, friendships that last a lifetime.

Thank you to The Rotary Club of Toronto Charitable Foundation for helping to handback childhood and helping kids with arthritis enjoy being kids!


 

Quebec

Hand in Hand has its own newsletter!

Hand in HandHand in Hand, our support and information program, now has its own newsletter, and you can receive it by email!
To subscribe and get all the news, send us an email!

Hand in Hand is offered in Quebec City, Montreal, Trois-Rivières and Sherbrooke, and many activities are available through webcasting, for you to enjoy from the comfort of your home.

The program provides patients and families with information on arthritis and resource referrals. It includes peer-support services, seminars and informal social activities to help people build a supportive network and learn to live more comfortably with the disease. For more information, please contact us at hhand@arthritis.ca.

 

 

Save the date!

Quebec Forum on ArthritisThe Forum on Arthritis is returning to Montreal! The 5th edition of this one-of-a-kind event will be held on Saturday, November 10, 2018 at the Palais des congrès de Montréal. Our team at the Arthritis Society is planning an exciting event with 30 seminars and workshops, including webcasts, satellite events and of course a trade show. Follow us on Facebook or keep an eye on our e-newsletter for registration information!

Photo credit: Frédéric Lavoie, photograph


 

New Brunswick

Walk with us On June 3 in Fredericton, Moncton, Hartland and Quispamsis!

Every year, communities in New Brunswick come together to support the Walk for Arthritis. This year’s events take place on Sunday, June 3 in Fredericton, Moncton, Hartland and Quispamsis.

The Walk is our big day across Canada – hundreds of Canadians come together to give a voice to the more than six million Canadians living with arthritis, including 125,000 people in our province. It has a huge impact on those lives – funds raised go towards offering programs, solutions and support in New Brunswick, along with cutting-edge research towards finding a cure.

“We always appreciate how much our participants and volunteers make the Walk a special day across New Brunswick,” said Susan Tilley-Russell, executive director for the Arthritis Society – Atlantic Region. “We see familiar faces, welcome new friends, and raise money and awareness for the people we love. We’re so fortunate to have committed volunteers in Moncton, Fredericton, Hartland and Quispamsis to bring these events to life with their hard work and enthusiasm.”

“With such a high prevalence in New Brunswick, we all have someone to walk for – friends, family or often ourselves. Let’s spread some hope and have some fun.”

Our Moncton Walk takes place at Mapleton Park (9:30 a.m. registration; 11 a.m. Walk). In Hartland, we’re back walking at the Hartland Covered Bridge (1 p.m. registration; 2 p.m. Walk). Our Fredericton Walk in Carleton Park begins with registration at 8:30 a.m. and the Walk at 10 a.m. In Quispamsis, we’re on the Walking track at the Q-Plex, with registration opening at 8:30 a.m. and the Walk following at 10 a.m.

Want to get involved and make a difference? For more information, visit www.walkforarthritis.ca


 

Prince Edward Island

 

Walk with us On June 3 in Charlottetown and Summerside!

Summerside Walk for ArthritisSpring is here, and we’re getting excited for this year’s Walk for Arthritis in Charlottetown and Summerside on Sunday, June 3.

This event has a huge impact on the lives of the more than 25,000 Islanders living with arthritis. Funds raised go towards offering programs, solutions and support on Prince Edward Island, along with cutting-edge research towards finding a cure. We also give a voice to the more than six million Canadians living with arthritis.

“The Walk for Arthritis is a day to come together across Prince Edward Island – and across Canada – to give hope to those living with the devastating effects that arthritis can have on lives,” said Susan Tilley-Russell, executive director for the Arthritis Society – Atlantic Region. “We’re fortunate to see so many familiar faces come out to support this event every year, and love to meet new participants ready to make a difference on PEI.”

“With such a high prevalence in Prince Edward Island, we all have someone to walk for – friends, family or often ourselves. Let’s spread some hope and have some fun.”

Our event in Charlottetown takes place at the UPEI Outdoor Track on Sunday, June 3. Registration opens at noon, with the Walk starting at 1 p.m.

In Summerside, we’ll walk the Waterfront Boardwalk. Registration is 10 a.m. and the Walk is 11 a.m.

The Walk wouldn’t be possible without our generous sponsors and the volunteers who give us their time on Walk day, and throughout the year.

Want to get involved and make a difference? For more information, contact Rebecca at (902) 628-2288 or visit www.walkforarthritis.ca


 

Nova Scotia

The RBC Celebrity Roast of Jim Spatz presented by Stewart McKelvey Raises $362,000

Celebrity Roast

The RBC Celebrity Roast of Jim Spatz presented by Stewart McKelvey was a tremendous success, raising over $362,000 in support of the Arthritis Society’s research, programs and services in Nova Scotia. The event took place at the Cunard Centre and honoured Jim Spatz, Chairman and CEO of Southwest Properties Limited. In the event’s 26-year history, it has raised more than $3 million in support of the 1 in 4 Nova Scotians living with arthritis.

Jim Spatz has been inducted into the Nova Scotia Business Hall of Fame, received the Queen Elizabeth Diamond Jubilee Medal for his significant community contributions and achievements, and in 2015 was named Atlantic Business Magazine’s CEO of the Year for Atlantic Canada.

Spatz joins an impressive list of past honourees, including Michael Donovan, John Risley, Dale Godsoe, the Late Paul O’Regan, Paul Sobey, Rob Steele, Colin and Mickey MacDonald and Stephen Plummer.

Nikolas Harris was recognized as this year’s Arthritis Hero. Harris was diagnosed with arthritis at just 22-months-old and spoke about his experiences growing up with this chronic disease. Harris is a dedicated volunteer, recipient of the Queen Elizabeth II Diamond Jubilee Medal and a member of the National Childhood Arthritis Advisory Council. Since its beginning, Nik has been a mentor at the Arthritis Society’s Camp JoinTogether, a week-long summer camp for Maritime children living with arthritis.

The Arthritis Society wishes to thank Jim Spatz, our generous sponsors and donors, and the volunteers that continue to make the Roast such a wonderful success here in Nova Scotia.

 

 

Walk with us On Sunday, June 3rd in Halifax, Sydney, and Berwick!

Spring is here, and we’re getting excited for this year’s Walk for Arthritis in Halifax, Sydney and Berwick on Sunday, June 3rd.

The Walk is our big day across Canada – hundreds of Canadians come together to give a voice to the more than six million Canadians living with arthritis, including 212,000 people in our province. It has a huge impact on those lives – funds raised stay here in Nova Scotia and go towards offering programs, solutions and support, along with cutting-edge research towards finding a cure. It’s a chance to help a great cause and have some fun!

Our goal is to grow this day so that communities around the province can get involved. In addition to our walks in Halifax, Sydney, Berwick and Clare, we’re hoping to start new events this year, specifically in the Truro and Bridgewater areas.

Think you can help us get things in motion in your community? We’d love to hear from you! Please contact Nicole Barron at (902) 429-7025 ext. 8225 or email nbarron@arthritis.ca.

“One in four Nova Scotians live with arthritis, the highest prevalence in Canada,” said Susan Tilley-Russell, executive director for the Arthritis Society – Atlantic Region. “We all have someone to walk for – friends, family or often ourselves. Let’s spread some hope and have some fun.”

The Walk wouldn’t be possible without our generous sponsors and the volunteers who give us their time on Walk day, and throughout the year. Want to get involved and make a difference? For more information, visit www.walkforarthritis.ca.

 

 

Camp JoinTogether Registration is open!

Camp JoinTogether - The Arthritis SocietyThe Arthritis Society is proud to offer Camp JoinTogether, a week-long overnight camp, to Maritime children living with childhood arthritis or similar conditions. Through amazing fundraising that happens all year long, the Society was thrilled to offer the largest camp to date in 2017 – welcoming 94 children to spend a week at Camp JoinTogether, where the fun lasts forever.

Registration has opened at https://brigadoonvillage.org/ and will close June 15, 2018.

Those looking for more information are encouraged to contact Jone Mitchell at 902.429.7025.

 

 

Join Team Arthritis in the Scotiabank Charity Challenge

Scotiabank Charity Challenge

In 2004, the Bluenose Marathon was born in Nova Scotia as a running event to showcase Halifax and Dartmouth. The event has since grown to welcome 13,000 participants annually and feature 6 running events: a 5KM, 10KM, half marathon, full marathon, marathon team relay, and two youth runs – a 4KM and 2KM.

The Scotiabank Charity Challenge offers the opportunity for runners and walkers of the Blue Nose Marathon to make their experience more meaningful by encouraging participants to fundraise while they train for a charity that is important to them.

Join Team Arthritis on May 19th and 20th, 2018 in the Scotiabank Charity Challenge and support the more than six million Canadians living with arthritis! Those interested in the event are encouraged to register online. Create an online fundraising account for Team Arthritis and begin raising funds to support the 462,000 Atlantic Canadians living with arthritis!


 

Newfoundland and Labrador

Walk Heroes show Sister Power

Walk Heroes show Sister PowerThe Healey sisters share a bond that is closely connected to arthritis. Mya was diagnosed with juvenile idiopathic arthritis shortly after her second birthday. Lily was actually born in St. John’s during Mya’s very first joint injection.

Now 11 and 9, Mya and Lily use their bond to raise awareness for a cause that affects their life every day. They are team “Sister Power”, using each other’s strengths to fundraise for the 2018 Walk for Arthritis on Sunday, June 3 in Paradise, N.L. Together they form a perfect pair and have already raised $3,000 for this year’s event.

“Arthritis hurts,” Mya says. “It can make you feel yucky and you have to take medicine so your joints don’t hurt all the time. We (fundraise) because we don’t want people to hurt anymore.”

Mya lives with JIA, uveitis (an inflammation of the eye associated with some forms of inflammatory arthritis), and selective mutism. For their mother, Mandy, these conditions have forced the family to adapt. The family takes things one day at a time, accepts trips to the hospital for Mya’s injections as “their normal”, and are constantly on the lookout for flare-ups that can alter Mya’s health daily. While arthritis limits Mya at times, Mandy says they keep a normal routine and feels the condition has brought the family closer together.

Part of that connection comes through their fundraising – they started participating in the walk four years ago, and have raised more than $11,000 through fundraisers such as quilt draws, auctions, a Change Challenge, school fundraisers, sold scenic photos and handmade sealskin items, approached businesses for donations, and a “Give One Get One Flu Shot Campaign with The Medicine Shoppe in their hometown Grand Falls Windsor, where $1.00 was donated for every flu shot.

Mandy says it is important to help the Arthritis Society not only to raise money for education programs, services and research, but it gives Mya connection with other people living with the disease and establishes a sense of community for her and the family.

“We want Mya to know that she’s not alone – that she’s part of something bigger and she is making a difference,” Mandy explains. “Her condition is forever but it is manageable, and with research and education, maybe we can create a pain-free tomorrow. It will take money and awareness to create that future.”

Seeing her daughters work hard to support each other is also very special for Mandy. She says Lily has always been Mya’s best friend, and acts as Mya’s spokesperson to help with her selective mutism. Lily is always there when she needs her, willing to go above and beyond to “help the people like Mya who are hurting” because her big sister is “so special”.

As for Mya, she feels the love and support. During a recent school project, she was asked what she would take first if she were forced to leave her home.

“My family,” she answered. “They are a big help to me because I have arthritis.”

Help Sister Power and the 100,000 people living with arthritis in Newfoundland and Labrador. Join the Walk at www.walkforarthritis.ca

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