As of June 1, 2018, Velcade (bortezomib) has been approved for re-treatment in Ontario!! Yahoo!!! 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: firstname.lastname@example.org
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
“Myeloma affects not only hundreds of patients but thousands of lives in the Ottawa-Outaouais region every year. It is our goal at the CISSS de l’Outaouais to provide the best possible care to all patients with myeloma. Through an interdisciplinary team of dedicated physicians, nurses and allied health workers and through our clinical research unit, we seek to give access to the latest advances in myeloma care.
Our fight extends across city, provincial and cultural boundaries. For decades, our patients have been grateful to benefit from the outstanding expertise and care of The Ottawa Hospital who offer access to stem cell transplantation and other novel therapies for patients of the Outaouais region. This has a tremendous impact for our patients who can access high level care close to home.
Through this unique collaboration and teamwork, we are confident that patients from the Ottawa-Outaouais region continue to receive outstanding care and this is made possible by the incredible advocacy work and support from your group. It is truly heartwarming for me as a physician as well as for patients and families to witness such a strong level of community support.
In the name of all patients, families and health care workers at the CISSS de l’Outaouais, we say thank you.”
The silent auction saw many donated gifts again.
Thanks to generous donations of everyone who supported us, we have raised
Thanks go out to so many including:
Frank Shepherd and David Rideout (co-chairs)
Committee: Leah Auclair, Alexandra Bumbu, Gilles Caron, Monique Chartrand, Joanne Gay, Elenita Horca, Antek Kubski, Paul Martin, David Panich. Ann Rideout, Jean Shepherd, Nicole Slunder and Robin Sully.
Thanks to all of the volunteers ( Susan Mayo and the team providing the refreshments, Stuart Jones and the team of marshals, Amarillis Figueiredo from the Ottawa Hospital and Nicholas Dibdin from Canada Blood Services who brought research posters, Lise Gay for offering to provide first aid if needed, and to all of you who made this event possible. Without the participation of so many, there would be no Walk and no funds raised!
“When we face challenging situations in life, whether the impact of tornados or Myeloma, strong support from our community makes a big difference.
To me this event is all about “Community”. The funds raised that support our research activities are extremely valuable – there are so many more things we can examine, but more importantly the impact of new drug trials and treatments can only be assessed through the participation and collaboration between medical teams, patients, and all the other stakeholders.
We really appreciate the strong support from Myeloma Canada and everyone in our local Community Network.”
Dr. Arleigh McCurdy
A reminder that our next Myeloma Community Network meeting will be Wednesday December 5th .
Our speaker is Dr. William Henry, DDS who is a local dentist with knowledge of the issues associated with dentistry for myeloma patients
We look forward to seeing you all at the Maplesoft Center, 1500 Alta Vista Drive, at 6.45pm and take this opportunity to wish you all a safe, healthy and peaceful holiday season.
Myeloma Community Network meeting will be Wednesday November 7th.
The presenter is Erin Mutterbach, the nurse practitioner with the Ottawa Hospital myeloma team.
Erin will provide valuable background on various aspects of myeloma treatments as well as responding to your questions.
Just a reminder that our October meeting is this Wednesday at the Maplesoft Centre 1500 Alta Vista Drive, starting at 6.45pm.
Our speaker is Dr. Ratna Bose who will talk about auto immune diseases and their link to myeloma.
Huge congratulations to everyone for another successful and enjoyable Walk –
despite some technical difficulties last Sunday due to the Friday’s tornados –
we raised $66,000 to date and more is trickling in.
Donations are still very much welcome! Just go to the link below:
Looking forward to seeing you all on Wednesday,
Jean and Robin.