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 FellowTopic – A Dose Escalation Study of Total Marrow Irradiation and Autologous Stem Cell Transplant for Relapsed Myeloma Patients.April 4th – Speaker – Marie-Claude Bourgeois-Daigneault PhDTopic – 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
Author: john.podgorski@gmail.com
Each post gives the opportunity was contemplation, image, words, enter.
December social: December 6
Dr. Kew, hematologist at the Ottawa Hospital, the will be the guest speaker at our Dec. 6th meeting.
Rather than having our regular sharing session after our discussion with Dr. Kew, we will have a social and invite everyone to bring hors d’oeuvres or sweets to share.
Myeloma Canada Leaders’ Summit
Robin Sully and Jean Shepherd attended the Annual Support Group Leaders and Advocacy Summits from Friday September 29 to Sunday October 1st. It was attended by 34 myeloma leaders from across Canada and was a great opportunity to network and brainstorm on our shared issues.
On Friday evening they honoured the leaders whose myeloma journey came to an end this year. We were privileged to acknowledge Irene Podgorski’s outstanding contribution to our myeloma community. She is missed both as a friend and colleague.
Some of the speakers on Saturday and Sunday included:
Marie-Claude Bourgeois-Daigneault, PhD from Dr. Bell’s Lab here at the Ottawa Hospital’s General Campus, talking about cutting edge research into Myeloma.
Gail Christy from Bereaved Families of Ontario.
Dr. Donna Reece, from Princess Margaret Hospital, Director of the Program for Multiple Myeloma, discussing all that is new in clinical trials and myeloma treatments.
Naveen from the Binding Site talked about blood tests and the best diagnostic tests.
Bill Dempster from 3Sixty Public Affairs told us all about advocacy and the world of reimbursement of myeloma drugs.
Some of the leaders and others involved in advocacy, spent Tuesday on Parliament Hill meeting MPs to discuss how the Federal Government can support us in advancing better and timely access to new treatments.
The whole event was excellent and we will pass much of the information on to the group at our next meeting and hope to have at least two of the speakers talk at one of our meetings in the New Year.
Jean Shepherd, Co-Chair, Ottawa-Gatineau Multiple Myeloma Support Group
Time to make some noise!
Myeloma Canada is part of a network called CONECTed (The Collective Oncology Network for Exchange, Cancer Care Innovation, Treatment Access and Education) which is comprised of a collaborative group of patient organizations who share similar interests :
Save Your Skin Foundation
Colorectal Cancer Canada
Myeloma Canada
Lung Cancer Canada
Melanoma Network of Canada
Lymphoma Canada
This group has put out a press release last week publicly calling out CAPCA (Canadian Association of Provincial Cancer Agencies) for the secrecy behind the creation of a new committee called the Cancer Drug Implementation Advisory Committee (CDIAC) in 2016. This news release was picked up by nationally and we need your help to spread the word and share our concerns. This committee works in total secrecy and can directly impact getting drugs to our patients (or even put a halt on the process).
Here’s what you can do to help make some noise about this issue:
Share this link with your networks (email and social media) and ask them to do the same. If you are on twitter, you can also tweet out to your health ministers or even local media. You can also tag CONECTed in your posts as well (for all those who took part in Facebook 101, you should now be able to do that )
http://www.nationalpost.com/prnewswire/index.html?rkey=20171018C6461&filter=3072
Time to make some noise!
Steps to a Cure!
2017 Myeloma Walk was a great success!
We have raised $68,000 and counting!
Thank you one and all for contributing!
Annual Ottawa-Gatineau Myeloma Walk!
2017 Ottawa-Gatineau Walk for MyelomaSteps to a Cure!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. The funds raised will support the work of Myeloma Canada and the Ottawa General Hospital. Our fundraising goal this year is $75,000. With your help we can do it! Pull a team together of family and friends and register for the Walk or simply make a contribution. It all counts! It will be fun! You can walk 1-5 km along a beautiful riverside trail or simply enjoy music, refreshment and conversation in the Ron Kolbus Lakeside Centre. We are looking forward to seeing you there and thank you for your support! Sunday, September 24, 2017 – 12:00 pm Ron Kolbus Lakeside Centre |
Check out the link below:
At the bottom of the page are the links to Register and to Donate.
(French mirror site also available by Francais link top right corner.)
OTTAWA-GATINEAU MULTIPLE MYELOMA SUPPORT GROUP 2017 Fall Meeting Agenda
Please note the change to Wednesday meetings in 2017
The Ottawa-Gatineau Multiple Myeloma Support Group invites Myeloma patients, 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. The mission of the Support Group is to provide hope and to empower Myeloma patients, family, caregivers and friends through education, advocacy, patient care and support and sharing experiences.
Wednesday, September 13th
Bev and Paul Lumb, will talk about each stage of the myeloma treatment process from diagnosis to remission from their experience as a patient and caregiver and facilitate a broader discussion on the myeloma journey.
Wednesday, October 4th
Dr. Renata Francovitch, MD, FCFP, Dip. Sport Med., will talk about the vital importance of exercise to maintain myeloma patient’s bone and muscle strength.
Wednesday, November 4th
Dr. Khadija Bhimii, OGH Palliative Care Program, will focus on pain management for Myeloma patients.
Wednesday, December 6th
Dr. A Kew will update us on ongoing myeloma clinical trains at the Ottawa Hospital and the process for patient engagement.
At the Ottawa Hospital promoting the walk!
Ottawa-Gatineau Myeloma Walk !
You might find it tricky to locate the Ottawa Gatineau Myeloma March on the Myeloma Canada website.On the scroll down menu we do not appear as an option because half our funds raised here go to our own research at the Ottawa Hospital.
Check out the link below:
At the bottom of the page are the links to Register and to Donate.
(French mirror site also available by Francais link top right corner.)
Year-end update from Robin and Jean
The Support Group has had a successful year with 9 meetings attended by on average 25-35 people, both patients and caregivers.
We had presentations from Aldo Del Col, Co-Founder and Chairman of Multiple Myeloma Canada in April, as well as both Dr. McCurdy and Dr. Kew in the Fall and Spring.
We want to give a huge “thank you” to Bev and Paul and Rosemary for organizing and providing the refreshments each month, it’s a great social opportunity and they do a wonderful job.
Robin and Jean are already thinking about the next sessions and would love your feedback on what to focus on, as well as what worked or didn’t work.
Possible topics not yet covered include pain management, funding drug access, what support is available at later stages and how to access it, and support for caregivers. Should we revisit any of the topics we covered in this year’s sessions?
Please give Robin and Jean feedback as these are your meetings, and we want to meet the group’s needs.
Myeloma Ottawa Gatineau 