Author: john.podgorski@gmail.com

OTTAWA-GATINEAU MULTIPLE MYELOMA COMMUNITY NETWORK 

 supporting patients with myeloma

The Ottawa-Gatineau Multiple Myeloma Community Network 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

This is our last meeting before the summer break until September.  

We will begin with a short update on plans for this year’s Steps to a Cure Walk from Frank Glenn.

Our guest speaker,Dr. Peter Konzuk, ophthalmologist, will talk about The effects of Myeloma on the eyes.   

After his presentation there is a break for refreshments and discussion followed by a session where patients and caregivers share their experience with the disease. The mission of the Community Network is to provide hope and to empower Myeloma patients, family, caregivers and friends through education, advocacy, patient care and support and sharing experiences.

Please note: Dr. Konzuk sent along a web site about the Orbis Eye Surgery hospital plane that travels the world performing eye surgeries (https://can.orbis.org/en/the-orbis-flying-eye-hospital-is-coming-to-ottawa ).  He was field medical director of the Orbis Project – 1989-90. I think his talk and presentation will be very interesting.  The Orbis Flying Eye Hospital which will, coincidentally, be here in Ottawa June 1-3 and you can register on the web site if you wish to go and see it.

This year’s Walk will take place on Sunday September 22^nd at the Ron Kolbus Lakeside Center.

The Ottawa-Gatineau Multiple Myeloma Steps to a Cure Walk is organized by members of the Ottawa- Gatineau Myeloma Community Network and other volunteers. The vision of the Network is to improve the quality of life for those affected by multiple myeloma and its mission is to provide support for those affected by multiple myeloma in the Ottawa-Gatineau Region through awareness, education, advocacy and supporting research.

The goals for our Walk are to bring the myeloma community together: patients, caregivers, family, friends, researchers and clinicians; to increase awareness of the disease; and ,to raise funds to support research activities, both locally and nationally to improve patient care and outcomes.

Myeloma Canada is our national partner in the Walk, and receives half of the funds raised to help support their range of research activities (including the Myeloma Canada Research Network). In recent years, the Ottawa Hospital Foundation has received the other half which has benefitted Dr. McCurdy’s myeloma research activities.

This year locally we hope to support the expansion of the Ottawa General Hospital’s Car-T program to treat patients with multiple myeloma. Car-T therapy is an exciting new immune treatment for patients with blood cancers, that has the potential to treat even solid tumor cancers eventually. The treatment is currently being used for patients with lymphoma and leukemia. Dr. McCurdy’s group working with Dr. Natasha Kekre expect to be able to treat patients with myeloma in CAR-T clinical trials as early as the summer.

We are looking for volunteers to help organize this year’s event!

Please contact Frank Shepherd, Robin Sully, Gilles Caron or Glen Hussey if you are interested in helping.

For more information on the Ottawa –Gatineau Community Network please contact:

Robin Sully at 613 622 5461; maplecrest2553@explornet.ca or

Jean Shepherd at 613 277 4886; jean.shepherd@rogers.com

Half of the funds raised in our 2018 Walk, over $32,000, were presented to the Ottawa Hospital Foundation in a breakfast event on March 29^th. Michelle Oana from Myeloma Canada attended, along with Frank and Jean Shepherd, and all of our Myeloma Doctors.

Myeloma Canada is thrilled to announce that as of March 14 2019, daratumumab (Darzalex) is now covered for Ontario myeloma patients who are experiencing one or more relapses.

A huge thank you to Myeloma Canada’s Ontario Advocacy Committee, and everyone who got involved in advocating for access to this important treatment. Together, we are stronger in making myeloma matter.

Daratumumab is now funded through the Cancer Care Ontario New Drug Funding Program for patients with good performance status who have received at least one prior therapy, either in combination with bortezomib (Velcade) and dexamethasone or in combination with lenalidomide (Revlimid) and dexamethasone.

Ontario myeloma patients now have access to another vital therapy proven to provide better patient outcomes and improve quality of life.

The Ottawa-Gatineau Multiple Myeloma Community Network invites Myeloma patients, family, caregivers and friends to our monthly information and sharing meetings.

Bonney Elliott, Cancer Coach, Ottawa Regional Cancer Foundation:

Coping with the social and emotional impacts of living with Multiple Myeloma

PLACE: Maplesoft Centre, 1500 Alta Vista Drive.
TIME: 6:45-8:45 PM

Good News!

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: 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

“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.”

Dr. Abou-Nassar

The silent auction saw many donated gifts again.

Thanks to generous donations of everyone who supported us, we have raised

over $67,500.

Steps indeed!

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