Author: john.podgorski@gmail.com

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Parking at the Ottawa Hospital

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You can substantially reduce your parking costs at the Ottawa Hospital. Check out this link   http://www.ottawahospital.on.ca/en/patients-visitors/directions-maps/parking/

It provides detailed information on parking rates. Below is an excerpt from the above web page.

Day pass (purchase at pay station only) $13.00
Pass for 7 consecutive days $45.25
Pass for 30 consecutive days $92.00
Pass for 5 non-consecutive days $32.50
Pass for 10 non-consecutive days $65.00
Pass for 15 non-consecutive days $97.50
Pass for 30 non-consecutive days $195.00

If you need to go to a clinic weekly, purchasing a non-consecutive days pass will reduce your parking costs from $13 to $6.50 per visit, a 50% savings!

 

Great new on myeloma drugs!

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Recent good news is that as of June 1, 2018, Velcade (bortezomib) has been approved for re-treatment in Ontario!

This is something that the Ontario Advocacy Committee (OAC) has been working on for over 3 years. The success demonstrates the value of a concerted and coordinated effort of clinicians and patients working together to advocate for change. Thanks to Myeloma Canada and Martine Elias for their leadership, engagement and support.

The Ottawa-Gatineau Myeloma Community Network has two members on the OAC, Robin Sully and Sofia Tavoularis. Thank you to both of you for your advocacy work!

If you wish to get involved in drug policy advocacy in your province, please contact Martine Elias, Executive Director and advocacy expert on how to get started: melias@myeloma.ca

More good news: Kyprolis (carfilzomib) and Revlimid (lenalidomide) were the subject of Quebec funding announcements for Quebec patients.

We recommend that anyone affected by myeloma consider joining the Myeloma Canada mailing list. This way, you can keep up to date on any bulletins, notices, advocacy news, and other information emailed from Myeloma Canada. You can sign-up for the Myeloma Canada Newsletter, aptly named “Myeloma Matters”, through the Myeloma Canada website at: http://www.myeloma.ca/en/find-support/sign-up-to-our-newsletter

Final Meeting + Election Advocacy

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Just a reminder that our next and final Network meeting of the season is scheduled for  Wednesday , June 6th at 6:45pm in the Maplesoft Center, 1500 Alta Vista Drive.
Our speaker will be Frank Courjal, Director of Scientific Affairs for the Binding Site, an organization which provides specialist diagnostic products and professionals worldwide. He will talk about new diagnostic approaches for myeloma.
 
Ontario Election Advocacy campaign 
And to encourage you all to join in our Ontario election advocacy campaign. Myeloma Canada has posted the materials the Ontario Advocacy Committee developed on its website. It includes the draft letter that can be sent directly to candidates in your riding ( easy!); the background document; and a questions you may want to pose at an all candidates meeting or when meeting with individual candidates. And instructions!
 
It would be great if you could also send us any responses/results from your engagement. It will help us gauge the effectiveness of the campaign and inform the development of future election initiatives in other provinces.
 
The campaign is well on its way…we don’t have much time! The link is below.
 
Warm regards,
 
Robin and Jean
 

May 2 Meeting!

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Victoria Day 2015 138.jpgJust a reminder that our next Ottawa Gatineau Myeloma Community Network meeting is on Wednesday May 2nd at the Maplesoft Centre 1500 Alta Vista Drive at 6.45pm.  
Our speakers this time will be Dr. McCurdy and Dr. Hsiao. 
The meetings begin with a guest speaker and discussion followed by a session where patients and caregivers share their experience with the disease.
Our mission is to provide support and empower Myeloma patients, family, caregivers and friends through education, advocacy, patient care and sharing our experiences.
  
We will also provide some information about this year’s Walk, Steps to a Cure, which will take place on September 23rd at the Ron Kolbus Lakeside Centre.
 
Look forward to see you all there!

Clinical Trials Ontario

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As you know, patient engagement and participation in clinical research is vital for the development of new treatments and the generation of data that is more accountable, transparent and relevant to patient concerns.
 
Clinical Trials Ontario (CTO) will be live streaming two sessions, that may be of interest to you, from their 2018 Clinical Trials Conference.
 
We ask that you please distribute the information in this email to your respective groups.
 
Register early – Space is limited to 300 participants
 
Tuesday, March 27, 2018
 
Finding and Joining Clinical Trials – Experiences and Learnings
3:30 pm – 4:55 pm ET
 
Register for this session with this link: https://secure.e-registernow.com/cgi-bin/mkpayment.cgi?MID=3149&state=step2direct&event=500000533698475
 
 
Wednesday, March 28, 2018
 
Exploring Models of Patient Engagement
10:45 am – 12:00 pm ET
 
Register for this session with this link: https://secure.e-registernow.com/cgi-bin/mkpayment.cgi?MID=3149&state=step2direct&event=500000534169990

Cutting edge research in cancer immunotherapy: April 4 2018

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The Ottawa-Gatineau Multiple Myeloma Community Network invites patients with Muttiple Myeloma, family, caregivers and friends to our monthly information and sharing meetings.
 
PLACE:         Maplesoft Centre, 1500 Alta Vista Drive.
TIME:            6:45-8:45 PM
 
The meetings begin with a guest speaker and discussion followed by a session where patients and caregivers share their experience with the disease. Our mission is to provide support and empower Myeloma patients, family, caregivers and friends through education, advocacy, patient care and sharing our experiences.  The next meeting is on:
 
Wednesday, April 4th
 
Marie-Claude Bourgeois-Daigneault PhD, will describe: 
Cutting edge and new research in cancer immunotherapy
   
For more information on the Ottawa –Gatineau Myeloma Community Network please contact: 

Robin Sully, telephone: 613 622 5461 or email: maplecrest2553@explornet.ca or
Jean Shepherd, jean.shepherd@rogers.com
Co-chairs, Ottawa-Gatineau Myeloma Community Network

Ottawa -Gatineau Myeloma Community Network

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Proposed New Name:
Ottawa -Gatineau Myeloma Community Network:
Supporting Myeloma Patients and their Families
 
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Welcome to our proposed new name for our Support Group!
The name change came out of discussions at our October Support Group meeting.
It was generally felt that “Support Group” may send the wrong message to some patients and perhaps discourage them from participating. 
 Ottawa -Gatineau Myeloma Community Network was the chosen alternative and Jean and I added the by-line “supporting myeloma patients and their families”.  For those of you not at the October meeting ( or even if you were!) we look forward to your thoughts on the change! 
 

Meeting Schedule: March-June 2018 

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We are quite excited about the speakers that have agreed to participate and hope you too will find them interesting and engaging.  
Their topics will focus on current and upcoming treatments and diagnostics for myeloma. All promising!
Note: A French version of the schedule will follow.
 
March 7th  Speaker – Amarilis Figueiredo  Research Fellow
Topic – A Dose Escalation Study of Total Marrow Irradiation and Autologous Stem Cell Transplant for Relapsed Myeloma Patients.
 
April 4th – Speaker – Marie-Claude Bourgeois-Daigneault PhD
Topic – Cutting edge and new research in cancer immunotherapy.
 
May 2nd – Speaker – one of the Doctors from our MM Team.
 
June 6th – Speaker – Frank Courjal, Director of Scientific Affairs for the Binding Site