The Scleroderma Society of Ontario was founded in late 1985 with the help of The Arthritis Society and dedicated volunteers. With the first executive in place, the challenge began and an open information meeting was held on April 20, 1986 in Toronto.
Now based out of Hamilton, Ontario the organization functions daily with a limited but dedicated number of staff and widespread group of volunteers.
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The The Around the Bay Road Race is the oldest road race in North America and we are proud to be participating in support of Dr. Maggie Larché and the Hamilton Scleroderma Group, St. Joseph's Healthcare and Foundation. Every dollar we raise supports hope, healing and discovery at St. Joe’s. Please join our team or pledge your support: http://support.stjoesfoundation.ca/site/TR/Events/2020ATB?px=1127394&pg=personal&fr_id=1201#.XjRpqSN7kdV
To better understand the patient community’s online information needs, Boehringer Ingelheim would highly value all patients, caregivers, and patient representatives' input on this global survey. Note: The survey takes approximately 15 minutes to complete, but cannot be saved part-way through. Aggregated results available to all survey respondents.
https://hab.instarresearch.com/wix/p614202000.aspx?clink=2
Extending our gratitude to the Caroline Family Health Team in Burlington for their donation of $6,300 in memory of Lois Kraemer who passed away from complications of scleroderma. Their wonderful donation will continue to fund research and education efforts into the future, making a difference in patients' lives.
The The Around the Bay Road Race is the oldest road race in North America and we are proud to participate this year in support of the Hamilton Scleroderma Group and St. Joseph's Healthcare and Foundation. Every dollar we raise together supports hope, healing and discovery at St. Joe’s. Please join our team or pledge your support!
Let's form a team for @bayracerun and raise funds to support hope, healing and discovery @stjoeshamilton #bayrace2020. Details Here: http://stjoesfoundation.ca/atb
Some good research from University of Toronto that can potentially be used to benefit patients in the workplace.
Recruiting patients primarily from the Toronto Scleroderma Program, researchers from University of Toronto found most had unmet workplace needs including health benefits, special equipment, and flex time.
https://www.healio.com/rheumatology/scleroderma/news/online/%7B85efc890-940c-4135-94b3-d01734b5e7a5%7D/majority-of-employed-patients-with-scleroderma-report-unmet-workplace-needs?utm_medium=social&utm_source=twitter&utm_campaign=sociallinks
The 2020 National Scleroderma Conference this Sept will be the largest in Scleroderma Canada's history and we are excited to be hosting. Gain insight and knowledge from researchers and physicians over two full days of programming in Niagara Falls. We are expecting over 250 delegates from Canada, the United States and around the world making this a must-attend, international event. Please stay tuned, registration will be opening soon!
Did you know what Raynauds was before you developed symptoms? “In winter, I’ll wrap up and wear big boots but no matter what I do, my toes always go purple.” HuffPost UK speaks to multiple Raynauds sufferers about symptoms, treatments, the underlying diseases that might cause it, and more.
When the cold weather hits, pain and chilblains can be a sign of something more.
For the first time ever, Scleroderma Ontario will be participating in Hamilton's historic Around The Bay race. There's plenty of time until race day - March 29, 2020. Join our team or pledge your support!
Let's form a team for @bayracerun and raise funds to support hope, healing and discovery @stjoeshamilton #bayrace2020. Details Here: http://stjoesfoundation.ca/atb
We learn from each others stories - don't be afraid to share your experiences. If you are a newly diagnosed scleroderma patient, talk to us. Visit our website and learn how we can help. https://sclerodermaontario.ca/patient-stories
Has it been easy, or difficult to find proper info on diet & nutrition? Our friends at the SPIN group are looking for scleroderma patients to offer their insights in a focus group. 👇 👇 👇
Visit the SPIN website to see how they're helping the scleroderma community.
Thank-you Scleroderma Society of Ontario (SSO) for funding a 2020 SPIN Research Assistant, helping us connect with and provide support for the #scleroderma community!
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Nous aimerions remercier la Société de sclérodermie de l'Ontario pour la subvention qui nous a été offerte pour l'embauche d'un(e) assistant(e) de recherche SPIN pour l'année 2020. L'ajout d'un(e) membre à notre équipe nous aidera à élargir nos liens avec la communauté et à mieux soutenir les personnes atteintes de sclérodermie !
We are incredibly grateful for your generosity. A donation to the Scleroderma Society of Ontario helps us advocate to government for better treatments - like we did in November. It helps our researchers continue to find better treatments, and gives patients hope for the future. Everything helps. Thank you. www.sclerodermaontario.ca/donate
Scleroderma is a rare condition with roughly 3 out of 100,000 people developing the systemic form per year. The estimated rate of incidence in Canada sits at approximately 40,000 individuals.
Don't forget: mark your calendars for Sept 18-19 when the Bi-Annual National Scleroderma Conference lands in beautiful Niagara Falls. Watch for exciting announcements about guest speakers in the coming months.
The new year is nearly here, full of opportunity. Our strategy hasn't changed and we continue to make progress. Our goal will always be improving the lives of everyone affected by scleroderma.
As a new decade approaches, we look forward with optimism to a future where scleroderma patients have a dramatically improved quality of life. We will continue campaigning for better treatments, investing in the research, and striving for better education and more awareness of this disease. Join us in 2020.
December is usually a time for reflection and we can't stop thinking about the wonderful things that 2019 held for us. A stupendous rooftop fundraiser with acclaimed recording artist Robert Pilon, an enormous turnout for our June Walks (some with special guests!) and the illumination of Niagara Falls in blue. What are some of your favourite memories from 2019?
It takes so much energy, more than just physically, and most people don't really understand that. And to be fair, it's not really their fault because they've never experienced what you are living.
Patients with chronic illnesses offer tips for dealing with fatigue, pain, parties and more during the holidays. You probably do some of these things already - but we hope you find a new trick or two to help.
If you haven't finished up your holiday shopping yet, the Toronto Eaton Centre and a few other Cadillac Fairview malls offer this service as well.
With scleroderma, complications like painful digital ulcers and contractures can disrupt daily living and make holiday gift wrapping difficult or impossible. Take advantage of gift wrapping services offered at malls like Toronto's Yorkdale Shopping Centre or Calgary's Core.
Your donations are literally changing lives. Thank you for letting us know what's important by continuing to support The Scleroderma Society of Ontario. Enjoy the holidays with your loved ones. #HardWordHarderDisease
Your donations are literally changing lives. Thank you for letting us know what's important by continuing to support The Scleroderma Society of Ontario. Enjoy the holidays with your loved ones.
Two weeks ago we engaged our government in a full day of meetings at Queen's Park to champion scleroderma patients and fight for better access to treatments. We are excited to say, thanks to Temple Scott Associates, it was very successful. Enjoy these photos from the day.
A full day of meetings with MPPs, fighting for better access to treatments, and subsidization of expensive medications.
A full day of meetings with MPPs, fighting for better access to treatments, and subsidization of expensive medications.
A full day of meetings with MPPs, fighting for better access to treatments, and subsidization of expensive medications.
December 11 (tomorrow) 1-3pm, scleroderma patient support group meeting welcomes anyone wishing to talk about the disease in a confidential and supportive environment. Richelieu-Vanier Community Centre, 300 Péres Blancs Ave. Ottawa.
It's a terrible time of year for Raynauds. If you have scleroderma, chances are this was one of the very first symptoms you noticed. Here, the Raynauds community shares 15 (painful) photos of how it affects hands, feet and even knees. Feel free to share your own photos, or the ways in which you combat the effects of Raynauds, in the comments.
Do you experience this, too?
Scleroderma Society of Ontario's cover photo
Thank you to all our supporters who looked into their hearts and found something to give this week. Your kindness is helping us fund important research and give hope to scleroderma patients. #ThankYouThursday
We are incredibly grateful for your generosity today. A donation to the Scleroderma Society of Ontario on #GivingTuesday helps us advocate to government for better treatments, helps our researchers continue to find those treatments, and gives patients hope for the future. Everything helps. Thank you. www.sclerodermaontario.ca/donate
On November 27 we spent the day at Queen's Park in nearly two dozen meetings, fighting for better access to medications and other key ways to improve the lives of scleroderma patients. We were welcomed during Question Period, and MPPs offered their help and attended our reception afterward. In short, we made an impact. Thank you to everyone who shared their stories and to those who continue to advocate for patients. Watch MPP Donna Skelly's member statement here: https://youtu.be/d_3zFwncFsM?t=875
Taras Natyshak: 0:00 Mike Harris: 1:51 Peggy Sattler: 3:25 Jeremy Roberts: 5:02 Sandy Shaw: 6:30 Mike Schreiner: 8:07 Logan Kanapathi: 9:48 Marit Stiles: 11:...
On November 27 we met with Members of Provincial Parliament, their representatives, and the Premier himself to share personal stories and advocate on behalf of patients. With this opportunity we helped decision-makers understand the importance of raising awareness of scleroderma, as well as the compelling need for improved access to and subsidization of unaffordable medications. #HardWordHarderDisease
A study published in the journal Nature Communications has found an antibody able to stop and even reverse disease progression in animal and cell models of PAH. It's a promising find that could stop the progression of PAH.
#PHAwarenessMonth
The Ky3 antibody blocked the activity of PAH-promoting osteoprotegerin, stopping and even reversing disease progression in PAH models, a study reports.
Do you, or someone in your family have scleroderma? Are you a caregiver to someone with scleroderma? We would ♥️ to have you attend our MPP Cocktail Reception Nov. 27, 5:00-7:00 pm at Queen's Park, Toronto. Please RSVP here: https://www.sclerodermaontario.ca/events-1-jzuts/queens-park-mpp-cocktail-reception
Scleroderma Society of Ontario's cover photo
#GivingTuesday is less than 🚨 TWO weeks 🚨 away! Your donation helps fund advocacy and awareness inititatives, and much-needed scleroderma research, giving patients the hope they deserve. Whether it's $50 or $5, everything helps. www.sclerodermaontario.ca/donate
November is Pulmonary Hypertension Awareness Month. It can affect anyone, at any age, including 8-12% of scleroderma patients. Untreated, average life expectancy of a PH patient is less than 3 years. Read more about this life-threatening complication of scleroderma at http://www.phacanada.ca/
"(The unpredictability of chronic pain) can lead to feelings of terrible guilt, which is why it’s essential that chronically ill people treat themselves with self-compassion." First published in Psychology Today, author Toni Bernhard discusses the myths and misconceptions of chronic illness.
4. "If chronically ill people are enjoying themselves, they must feel OK."
If you attended the Apollo Cannabis Clinic educational presentations at Living With Scleroderma in London, Ottawa or Hamilton, or missed the presentation and would like more info, including statistics on medical cannabis, we now have the link on our website 👉 https://sclerodermaontario.ca/patient-forums
Help us end scleroderma. #BlueRibbon
There is no cure for scleroderma, a disease that hardens the skin and internal organs. A Blue Ribbon offers hope to families who desperately need a cure. Donate today and help our researchers get one step closer. https://www.scleroderma.ca/donate
We've had a number of requests for a demonstration or video of exercising with resistance bands, and are happy to share Jenn Cino and Dr. Taylor Thompson illustrating exercises to help patients stay mobile.
Staying mobile and retaining range of motion is important for scleroderma patients. Certified Personal Trainer Jenn Cino @jenncino discussed exercising with resistance bands at the last Living With Scleroderma forum in Hamilton.
- Bands are very inexpensive.
- Small and portable, allowing for exercise anywhere.
- Excellent for building joint strength and increasing mobility.
Please mark your calendars for this important event. Together with medical professionals, we will discuss the latest research, share experiences and learn how to better cope with symptoms. Stay tuned for more details.
Scleroderma Society of Ontario 19th Bi-Annual Scleroderma Conference, September 18-19, 2020, Niagara Falls, Ontario
https://www.sclerodermaontario.ca/
Have you been looking for a support group in the Ottawa area? Come on out to the Ottawa Scleroderma Support Group meeting Wed, Nov. 13, from 1-3pm. Richelieu-Vanier Community Centre, 300 Pères-Blancs Ave. Parking is free.
Mark your calendar for Queen's Park Advocacy Day! On Wed Nov 27 our staff, board and select scleroderma patients will meet with elected officials including Minister of Health, the Hon. Christine Elliott, to promote awareness and request funding for medications and patient education. A cocktail reception with MPPs will take place afterward and we sincerely hope you'll join us. Please register at www.sclerodermaontario.ca/events
Speaking at Living With Scleroderma in Hamilton, Dr. Hambly offered an important advisory; research indicates ILD is exacerbated by acid reflux. Lifting the head of your bed (not your pillow or mattress) 4-6 inches is very important for scleroderma patients. Both Drs. Hambly and Larché of the Hamilton Scleroderma Group implore patients to raise the head of their bed.
Registration for Living With Scleroderma forum starts 2pm Oct 29, The Courtyard by Marriott, (1224 Upper James, Hamilton) with easy access from the Lincoln M. Alexander Parkway and free parking. Buffet dinner 5pm.
Planning to attend Living With Scleroderma patient forum in Hamilton on Oct 29th? (It's free!) Please register before 3pm, Friday, Oct 25th so that we can prepare the space to accommodate everyone for this event. You can register online at www.sclerodermaontario.ca/events
Don't miss Living With Scleroderma, a free patient forum presented in partnership with the Hamilton Scleroderma Group. This is a free event with speakers from Hamilton's medical community discussing many aspects of the disease including treatment options, common testing patients may require, and new research advances. 2 pm, Tues Oct. 29. Courtyard by Marriott, 1224 Upper James St. Hamilton. Dinner included.
Register online at www.sclerodermaontario.ca/events
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To better understand the patient community’s online information needs, Boehringer Ingelheim would highly value all patients, caregivers, and patient representatives' input on this global survey. Note: The survey takes approximately 15 minutes to complete, but cannot be saved part-way through. Aggregated results available to all survey respondents. https://hab.instarresearch.com/wix/p614202000.aspx?clink=2
December is usually a time for reflection and we can't stop thinking about the wonderful things that 2019 held for us. A stupendous rooftop fundraiser with acclaimed recording artist Robert Pilon, an enormous turnout for our June Walks (some with special guests!) and the illumination of Niagara Falls in blue. What are some of your favourite memories from 2019?
Your donations are literally changing lives. Thank you for letting us know what's important by continuing to support The Scleroderma Society of Ontario. Enjoy the holidays with your loved ones. #HardWordHarderDisease
Your donations are literally changing lives. Thank you for letting us know what's important by continuing to support The Scleroderma Society of Ontario. Enjoy the holidays with your loved ones.
We've had a number of requests for a demonstration or video of exercising with resistance bands, and are happy to share Jenn Cino and Dr. Taylor Thompson illustrating exercises to help patients stay mobile.
Attention Ottawa CFL fans! Heading down to Hamilton to support the REDBLACKS in the Oct 19 game vs. the Ticats? Purchase your tickets through our office and support much-needed scleroderma research at the same time. Call 905-544-0343.
Support scleroderma research and the Hamilton Tiger-Cats! Limited tickets available for Oct.19th game vs. Ottawa, with proceeds supporting the Scleroderma Society of Ontario. To purchase call our office 905-544-0343.
Support scleroderma research and the Ticats! Limited tickets available for Oct.4th game, with proceeds supporting the Scleroderma Society of Ontario. To purchase call 905-544-0343.
In a touching speech, Dina-Marie shares her fears, tells us why she wants to help the scleroderma community, and why the Scleroderma Society of Ontario is so important. Watch 👇
Thursday evening's scleroderma fundraiser, Shout It From The Rooftop, was a big success, a one-of-a-kind event. Featuring delicious food from Earth to Table Bread Bar, cocktails from Zirkova Vodka, and an intimate yet powerful performance by renowned vocalist Robert Pilon. Thanks to all who helped make this night possible and stay tuned as we'll be sharing more video from the evening.
See the Ticats play Oct 4th and 19th and help scleroderma research! Only 100 tickets available with proceeds supporting the Scleroderma Society of Ontario. To purchase call 905-544-0343.
Imagine where you could go with a WestJet Gift of Flight! Play Scleroderma Ontario's Dare to Care Lottery and dream! Money raised by lottery players goes toward scleroderma education, awareness and research! For tickets call us at our office 905.544.0343
Siobhan, the Violin MD, introduces Claudia who struggles with prevalent scleroderma symptoms like Raynauds phenomenon, digital ulcers and skin tightening. To watch the entire video, visit https://www.youtube.com/watch?v=1gH9Dcb6C-I&feature=youtu.be
Imagine winning Tim Hortons coffee for a year! Play Scleroderma Ontario's Dare to Care lottery and you just might! Money raised by lottery players goes toward scleroderma education, awareness and research. For tickets call us at our office 905 544 0343.
Saturday was a beautiful day for a cruise! Thanks to all those who joined us for our Ride for Scleroderma. Thank you to Tim Hortons for sponsoring. Stay tuned for more exciting events.
June 29th is your chance to see Niagara Falls lit blue for # World Scleroderma Day! If you haven't visited, this is the perfect time to go. Lighting will take place in the evening, at 10pm.
In memory of her much-loved grandmother, Angelina set up a hot dog and lemonade stand this weekend at Centro Panini in Woodbridge, with a goal of raising money to fight scleroderma. After a wonderfully successful day (and running out of lemonade!), Angelina made a fresh-squeezed donation of $1,000 to the Scleroderma Society of Ontario! We hope you run out of lemonade again next year too, Angelina.
Announcement time! Thanks to YOU, we raised over $82,000 at Walk or Run in the Park for Scleroderma at Battlefield Park Hamilton on Saturday! Thank you to everyone who participated and pushed themselves to do more. Together we can make a difference.
Come raise scleroderma awareness with us at Battlefield House Museum and Park, Saturday June 15! Enjoy a performance by the Cardinal Newman Drumline Band, sandwiches, burgers and dogs (both kinds 😉), fruit and dessert. Special guests include Hamilton sports mascots! Sign up at http://sclerodermawalkrun.ca/hamilton-walk-run-ride/
Wonderful Gibbons Park, London, kicks off the Canada-wide Walk or Run in the Park for Scleroderma on June 1st. Join in the camaraderie enjoyed by thousands who walk each year. It's time to raise some serious awareness 🎥 Register today: http://sclerodermawalkrun.ca/london-walk-run-ride/
Beautiful Budapest Park is home to the Toronto Walk or Run in the Park for Scleroderma this June. Walk with us June 22 and join in the camaraderie enjoyed by thousands who walk each year. It's time to raise some serious awareness 🎥 Register today: http://sclerodermawalkrun.ca/toronto-budapest-park-walk-run-ride/
On June 1st, London kicks off 2019's Walk or Run in the Park for Scleroderma! 🌳 Beautiful Gibbons Park 🎙 Brief talk by Dr. Janet Pope 🛍 Silent auction 📺 Raise awareness! Who are you walking for? Sign up today with your friends and family! http://sclerodermawalkrun.ca/london-walk-run-ride/
It's easier than you think to #ShowYourRare. Help researchers gather data on scleroderma with participating rheumatologists and clinics throughout Ontario. Join the SPIN cohort! #RareDisease Toronto Western Hospital, University Health Network, Dr. Sindhu Johnson Toronto - Mount Sinai Hospital, Dr. Sindhu Johnson London - St. Joseph's Health Care, Dr. Janet Pope Newmarket - Southlake Regional Health Centre, Dr. Carter Thorne Hamilton - McMaster University, Dr. Maggie Larche & Dr. Nader Khalidi Ottawa - The Arthritis Centre, Ottawa Hospital, Dr. Nancy Maltez
We are very appreciative of corporate donations. Gifts likes these, from Martin Weiler and our friends at First Capital Financial, go towards important research and educational efforts so that patients spend less time waiting and worrying.
Improving the lives of scleroderma patients is paramount to the Scleroderma Society of Ontario! Visit us at St. Joseph's Healthcare and Foundation Thurs Dec. 6 and Fri. Dec. 7 for a copy of our magazine, and learn about what we are doing to fund vital scleroderma research!
Have you heard of scleroderma? It's a debilitating disease affecting 16,000 Canadians, mostly women between the ages of 30-50. Come visit us at Fortinos between 11am-3pm this weekend (Dec.1 and 2), or at St. Joseph's Healthcare and Foundation on Charlton next Tuesday, Thursday and Friday (Dec.4, 6, 7) between 9am-5pm. We'll be there to talk to you about what we're doing to help end this disease, and how you can help.
Q&A from our Living with Scleroderma educational forum: Watch Dr. Maggie Larché and Dr. Premysl Bercik clear up the confusion around G.I. test results. A gastroenterologist can't always see scleroderma-related problems. Patients need to advocate for themselves, and take functional tests.
Ontario's Scleroderma Walks have concluded and we are grateful to all who came out to support the cause and raise much-needed awareness with us! If you missed the Walks, there's still a chance to help. The Virtual Walk is available to anyone - from anywhere. Every single dollar counts, so please, consider a donation. http://sclerodermawalkrun.ca/virtual-walk-canada/
June 29th is World Scleroderma Day! We invite you to join our team at Niagara Falls to help raise awareness and watch the falls be illuminated blue that evening (Lots of parking available off Niagara Pkwy). Can't make it? Scleroderma Canada will be using Facebook Live to cover the event on their page. (More details to come) #WorldSclerodermaDay
Exciting Walk update! SclerodermaShop is a partnership with 2 scleroderma patients who have created wonderful and unique clothing designs. They will be at the Hamilton (June 16) and Toronto (June 23) Walks selling the t-shirts and donating a percentage of sales back to SSO. Please check them out!
Historic Battlefield House Museum and Park hosts Walk or Run in the Park for Scleroderma Saturday, June 16th! Join us for an excellent day of raising funds & awareness in Stoney Creek. - Light refreshments provided by Tim Horton's - Pet-friendly park - MP David Sweet, MP Bob Bratina, Bill Kelly to address the crowd - Post-Walk BBQ! Register online now at http://sclerodermawalkrun.ca/hamilton-walk-run-ride/ or 10am at the walk.
June 1 marks the beginning of Scleroderma Awareness Month, and these kids have an important message to share about the upcoming Walk in Ottawa. http://sclerodermawalkrun.ca/ottawa-walk-run-ride/
Hamilton's Walk or Run in the Park for Scleroderma is less than a month away and we are looking forward to seeing everyone at historic Battlefield House Museum and Park! Registration includes a t-shirt and tote bag, lunch and refreshments. See you June 16th!
At the Fire & Ice Gala in Windsor, fundraising for Scleroderma research, a spectacular event organized by Dina-Marie Aiuto. Dina-Marie's brother is shucking oysters as we speak!
Rebecca Wissenz, President of the Scleroderma Society of Ontario, has some wonderful news to share. Watch Rebecca's holiday message below to hear how you have contributed to a great year!
Thank you, everyone! The Wishing Tree is brimming with touching thoughts from everyone who has given this season. Please, consider a donation and a message to hang alongside the beautiful notes we've received. Together we will beat scleroderma! https://secure.e2rm.com/registrant/DonationPage.aspx?eventid=233869&langpref=en-CA&Referrer=http%3a%2f%2fwww.sclerodermaontario.ca%2f
For years, the Caroline Family Health Team has been an important part of our fundraising family. This year C-FHT presented Jennifer Botelho with a cheque for an amazing $6,000 all raised from their book and CD sale. Thank you, Caroline Family Health Team, for your kind donation. We are always grateful for your support!
Ongoing research for scleroderma is changing lives, and your donation is the only way to continue to bring us closer to a cure in 2018. As you celebrate the season with your families, please hang a ribbon on our Wishing Tree, and help those whose lives depend on it: http://www.sclerodermaontario.ca/Donate_To_Scleroderma.html
What are you grateful for? #GivingTuesday celebrates everything you have and gives you a chance to give back. If you can help us, we need help spreading the word to raise money for research for a cure. Click here if you can help: https://ep986.clickfunnels.com/optin17667909
On Nov 14, for her extraordinary contributions to the scleroderma community, as well as to her hometown of Hamilton, our past-president Maureen Worron-Sauvé was inducted to the Hamilton Gallery of Distinction. Her leadership is both admired and applauded, and we are grateful for her dedication.
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