Updates

 

Living with Scleroderma Patient Education Forum 2017

Our 3rd annual education forum in September was a huge success! 120 scleroderma patients, family members, and support persons came out for an evening of education and support.

We heard from many who attended that this event was helpful and informative. There we also good comments and suggestions for future events that will be taken into consideration.

Big thanks to this team of devoted physicians who took the time to share their knowledge and expertise:

Maggie Larché

Nader Khalidi

Faiza Khokhar

Nathan Hambly

Gerard Cox

Maureen Sauve also shared invaluable suggestions from a patient perspective which was appreciated by many in attendance!

 

Thanks to Dr. Kjetil Ask and his team of students with the McMaster Demystifying Medicine Program, these presentations are available for viewing here.

 

The Hamilton Scleroderma Group would also like to thank the Scleroderma Society of Ontario for their ongoing support of education events such as this.

 

Stay tuned for next years’ event!

 


Help Team Scleroderma Research! Feb 20, 2017

This year the Hamilton Scleroderma Group is participating in both the Around the Bay Road race and the Paris to Ancaster: A Ride for Research with a goal to raise $10,000 to fund vital research in Scleroderma.

 

The Around the Bay takes place on Sunday, March 26th at FirstOntario Centre in Hamilton and Team Scleroderma Research is participating for the first time this year.

The event offers several ways to participate – 5k run/walk, 30k and Relays –something for everyone!

CLICK HERE to join or donate to Team Scleroderma Research in the Bay Race (Registration is open until March 20th)

More details at: bayrace.com

The Paris to Ancaster takes place on Sunday, April 30th and finishes at the Morgan Firestone Arena in Ancaster and Team Scleroderma Research is returning this year!

This event also offers several ways to participate – 20k family fun ride, 40k and 70k races!

CLICK HERE to join or donate to Team Scleroderma Research in the Paris to Ancaster.

More details at: parisancaster.com

For questions, please contact: Andrea Gardner gardnera@stjoes.ca 905-522-1155 x33626

What would you like to know? Sep 15, 2016

Do you have questions related to scleroderma?

Can you think of topics that you feel should be part of our patient education initiatives?

We want to hear from you! We value your experience as someone affected by scleroderma and we would love to hear your thoughts.

Please fill out this brief survey to help us better understand how we can help you.

Scleroderma Educational Needs Assessment

Help Us Demystify scleroderma!

Students at McMaster have developed 9 short videos to educate people about scleroderma. These videos will be available to the public soon, but first they need your help!

demystify

Step 1

Go to the Demystifying Medicine webpage

Step 2

Watch ANY video!

… videos are only 3 to 6 minutes long!

Step 3

Scroll down to the bottom of the page to ANSWER 10 SIMPLE QUESTIONS related to that video!

 

THANK YOU FOR YOUR FEEDBACK! Your comments will be used to improve videos & to select new topics to demystify!

Please contact demystifyingmedicine@gmail.com

  • With further questions
  • If you would like to be involved in creating new videos
  • If you would like to provide ongoing feedback

Just a reminder, you can always communicate with the Hamilton Scleroderma Group. Just click on the contact option at the top of the page to send a message.

Fundraising Update June 24 2016

Through tremendous funding from the Scleroderma Society of Ontario, the Hamilton Scleroderma Group was formed to help with awareness of, education in and pushing forward research in scleroderma.

The Hamilton Scleroderma Group put together a team of 20 cyclists who participated in the recent St Joes Foundation Paris to Ancaster Bike ride. Through this ride, we raised just over $10,000.

The $10,000 will be matched by McMaster university, and that combined amount will be multiplied x2 by the Ontario Graduate Scholarship.

Thus $10,000 turns in to $20,000 from the University matching, which turns in to $60,000 through the OGS doubling…

THIS MEANS THAT WE CAN have 4 graduate students working on systemic sclerosis or fibrosis or other connective tissue disease over the next 4 years.

We are very excited to be partnering with the SSO on projects such as this.

These studentships are invaluable to continuing the research work of the Hamilton Scleroderma Group and getting closer to understanding the mechanisms behind the disease, which in turn will allow for the development of therapies.

Thank you to all who sponsored this important funding event – your donations were multiplied x6!

With very best wishes

Maggie Larché, Chair, Hamilton Scleroderma Group


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