Next Meeting!
Wednesday, September 5, 2018 at 6:45 at the Maplesoft Centre, 1500 Alta Vista Dr., Ottawa.
2018 Ottawa-Gatineau Walk for Myeloma – Steps to a Cure!
The Walk Committee has been hard at work organizing our major event of the year.
This year’s goal is to raise $85,000.00.
Join the Ottawa-Gatineau Myeloma Walk and take a step towards a cure for multiple myeloma! The Walk not only increases awareness of the disease but importantly helps fund clinical research and supports advocacy for accelerated access to game-changing therapies for Canadian patients living with myeloma. Multiple Myeloma remains a relatively unknown and rare form of blood cancer. Supporting research and raising awareness of the disease is critical.
Half the funds raised in our Ottawa-Gatineau Walk will support the work of Myeloma Canada and half will go to support myeloma research initiatives at The Ottawa Hospital. All in the interest of improving patient care and ultimately finding a cure!
Download your participant toolkit and kick-off your fundraising campaign today!
Follow the link below and you will be able to form a team, join an existing team or register as an individual:
http://support.myeloma.ca/site/TR?fr_id=1101&pg=entry&s_locale=en_CA
We also hope to have Facebook page up and running soon which will have information on the walk as well an opportunity for sharing our journeys.
When
Sunday, September 23, 2018
Where
Ron Kolbus Lakeside Centre, Ottawa, ON
Registration Start
12 PM
Contact
Name: Dave Rideout, Robin Sully, Gilles Caron
Email: rideoutda@mac.com, maplecrest2553@xplornet.ca, gillescaron@outlook.com
2018-2019 Meeting Speakers
Our meetings will continue to be held at the Maplesoft Centre on the first Wednesday of the month – September to November and March to June.
The detailed schedule will be available and sent out in early August. The first meeting is scheduled for Wednesday, September 5. The fall program will include sessions with:
- Erin Mutterbach, the Myeloma nurse practitioner who will talk about her role working with myeloma patients and clinicians;
- Dr. McCurdy who will focus on interpreting blood results and using MyChart;
- a dentist to talk about specific dental challenges for myeloma patients; and
- a session on autoimmune diseases and cancer.
In the Spring we are hoping to organize sessions on:
- new treatment developments with one of our clinicians;
- an update on transplants with Dr. Atkins;
- a session on kyphoplasty and vertebroplasty for patients with damaged backs; and
- a session on the role and activities of Myeloma Canada.
If you have any topic or news item you would like included in future meetings or newsletters, or other suggestions or requests, please contact Robin Sully, Jean Shepherd or anyone on the Executive Committee.
Team Multiple Myeloma!
There’s a new doctor on Team Multiple Myeloma.
We are happy to welcome Dr. Janey Hsiao.
The team now consists of:
Dr. Arleigh McCurdy
Dr. Andrea Kew
Dr. Janey Hsiao
Erin Mutterback, NP
Christine Veal, RN
Kimberly Hutson-Ladouceur, Administrative Assistant
Parking at the Ottawa Hospital
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!
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
www.stepstoacure.ca
www.stepstoacure.caFinal Meeting + Election Advocacy
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!
Just 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!
