Chordoma Foundation

New initiative in Canada advances research, builds community

Since its inception, the Chordoma Foundation has made great strides toward optimizing chordoma standard-of-care guidelines and initiating critical research in search of a cure. Canadian researchers have been an important part of this effort, with chordoma-dedicated research taking place at the University of Toronto, the BC Cancer Agency, and McGill University.

Funds contributed by chordoma patients and their networks have supported these crucial efforts. Canadian donors, both personally and via fund-raising events, have generously contributed more than $170,000 to Foundation-supported research over the last 10 years.

We are now very pleased to announce a NEW collaboration, with the Canadian Cancer Society (CCS), that will serve to accelerate this effort on the part of the Canadian chordoma community. 

Previously, donations by Canadians to the Chordoma Foundation have not been routinely tax-deductible. Thanks to this new partnership with the CCS, Canadian donors will be able to make tax-deductible gifts in support of cutting-edge, Canadian chordoma research.

CCS is committed to supporting cancer patients and their families and raising money to fund research for all types of cancer. It is the largest national charitable funder of cancer research in the country, investing more than $40 million in the past year. It has a gold standard expert review process to select research grants and administer them.

Working together, the two organizations aim to raise $200,000 over two years for chordoma research, strengthening fund-raising efforts in Canada and further building public awareness and connections between members of the country’s chordoma community.

The architects

This collaboration would not have been possible without the involvement of dedicated champions Edward Les and Steven Golick.

Before they were diagnosed, Ed was a pediatric emergency physician in Calgary, and Steven was a restructuring lawyer and musician in Toronto. In the years since, both have added tireless chordoma advocate to their already impressive resumes.

Ed and Steven first met at a Chordoma Foundation donor meeting in Manhattan in 2015, but it was last summer, at the International Chordoma Community Conference in Boston, that the two cemented their friendship and decided to turn their shared experience into an opportunity for other Canadian patients.

Grateful for the positive role the Foundation had played in their own journeys, and enthused by the scientific progress being made due to the Foundation’s pioneering initiatives, both Ed and Steven have become active donors and volunteers. Ed was an early member of our Board of Directors and currently serves on our new Community Advisory Board, and Steven has been very active as a fundraiser and advocate.

Filling a gap

Despite CF’s growing reach, many chordoma patients still remain isolated and disconnected from CF, the larger chordoma community, and the reliable information and guidance that could help them to make important care decisions. Steven and Ed are determined, as much as possible, to remove any impediments that prevent chordoma patients in Canada from being intimately connected to the Chordoma Foundation.

“We already have a record of locally-driven chordoma research and we want to continue to build on that, by creating links between Canadian patients and providers, and promoting the Foundation as the go-to resource for the most up-to-date science and support.”

“For me, this has been, and continues to be, a case of enlightened self-interest,” said Ed, who has been living with chordoma for 10 years and has served as a personal resource for many other patients during this time. “My involvement with the Foundation has benefited me tremendously. I’ve had access to advice and resources that have played a big role in allowing me to continue to enjoy life with my wife and four children, and to continue to be productive and to practice medicine. I want that to be true for others as it has been for me. We already have a record of locally-driven chordoma research and we want to continue to build on that, by creating links between Canadian patients and providers, and promoting the Foundation as the go-to resource for the most up-to-date science and support.”

“The accomplishments of the Chordoma Foundation are exceptional” echoes Steven, who was introduced to CF executive director Josh Sommer shortly after his diagnosis in 2012 and has been rallying his network of friends in the restructuring community and in music to raise funds for the Foundation’s work ever since. “This is a rare diagnosis, which affects one in a million people per year, so it’s important to build the community and collaborate across borders. Getting involved with the Chordoma Foundation is a fantastic opportunity for Canadian patients and their families. We know Josh and his team are the right ones to shepherd this effort forward. Our challenge has been to find a way to expand the Foundation’s reach here, and create opportunities for more Canadian researchers, chordoma patients, and their families to become involved.”

Finding a partner

Recognizing the need for a local partner to help achieve these goals, Steven, Ed, and executive director Josh Sommer reached out to the leadership team at the Canadian Cancer Society (CCS). Together, they mapped out a collaboration aimed at supporting high-impact chordoma research in Canada, elevating the profile of chordoma within the Canadian research community, and enabling interested parties to make tax-deductible donations to support this work.

“We were overwhelmed by the openness and willingness of CCS to make this happen,” recalls Ed. “Despite all the competing demands for their time and attention, CCS proved to be extraordinarily empathetic to our cause, and is extremely willing to join forces on this initiative. It has been heartwarming to work with an organization so committed to helping patients dealing with cancer.”

Every effort counts

Both Ed and Steven agree that they have found enriching relationships within the chordoma community.

“I would say I have an attitude of gratitude. Many people, myself included, have lived substantially longer and with a substantially higher quality of life, thanks to the efforts of the Chordoma Foundation. I feel it is my privilege – and my pleasure – to pay it forward.”

– Ed

The people I’ve met through this diagnosis and treatment, and the community we’ve built are really amazing. Josh’s drive, energy, commitment, and passion are inspirational. We can all learn from his example  that one person, one spark, can have a great impact, and make a real difference.”

– Steven

For other chordoma patients who are unsure of their ability to have an impact, Ed and Steven have the same advice: Don’t hold back – step forward and just do what you can. Every effort counts.

Get involved

The goal is to raise $200,000 over the next two years. These funds will be distributed through the CCS Research Institute’s Innovation Grants Program to promising peer-reviewed chordoma research projects by Canadian researchers, in concert with the Chordoma Foundation.

To support this important initiative, please consider making a donation.

MAKE A DONATION


For more information, or to get involved, contact Ed (ed@chordomafoundation.org) or Steven (sgolick@chordomafoundation.org), or reach out to us online at: chordomafoundation.org/contact-us.

Edward Les, MD is a pediatric emergency medicine physician in Alberta, Canada. A former CF Board member, Ed serves as the CAB’s Medical Liaison, acting as a link between our Medical Advisory Board (MAB) and the CAB. In this role, Ed brings important questions, issues, and concerns of the chordoma patient community to the MAB and helps the staff relay insights and recommendations from the MAB to the patient community.

 

Steven Golick is a retired partner of Osler Hoskin & Harcourt LLP, one of Canada’s leading law firms. Steven now Co-Chairs the Patient and Family Advisory Council at the Odette Cancer Centre. In 2013 he received the Queen Elizabeth II Diamond Jubilee Award for his contributions to the community, including his role as a co-founder, director, and secretary of Kids Help Phone. During his 30-year legal career, Steven was a frequent author and speaker on the issues of insolvency and restructuring, and prior to that he was a professional musician. Today, Steven continues to pursue his passion for music, playing jazz, and recording.