Home Office, Canada

804 2 Lansing Square, Toronto, ON M2J 4P8

tel. 416.661.9541 fax. 416.661.7799

1

May 5, 2014

Dear Ms. Poisson,

I am writing on behalf of The Leukemia & Lymphoma Society of Canada (LLSC) to respond to the
questions posed in your email on April 30, 2014. Our organization has undergone significant
transformation and growth in the past decade: first, in our very successful partnership with the
leading American charity in our sector; then a series of changes in our approach to fundraising;
and finally significant senior management change. I am thrilled to be leading the LLSC, after a
long career in Canadian charitable management, as we embark on further innovation in the
decade ahead.

It is important to make clear that our Board takes their governance responsibility extremely
seriously and we benchmark our performance regularly to ensure we are using precious
donations effectively. According to CRA filings, the top ten Canadian health charities spend an
average of 53.4% on their mission, as a percentage of gross revenue. From our 2013 T3010, you
can see LLSC spends 57% of gross revenue on mission, and that is a number we have been
improving and plan to continue to improve in my new role as President.

Some of your questions indicate confusion about our mission as an organization and our
resulting priorities in staffing and spending. Our mission, vision and goals on our website spell
out the three-pronged approach to our role built around patient support, advocacy and
research. Our structure, staffing and budget reflect those three priorities.

We are proud of our nearly six million dollar contribution to Canadian researchers made up of
a significant contribution by our American partners as well as our own that we made last year.
But we are equally proud of the millions of program dollars we spend annually educating
Canadians including healthcare professionals about the challenges of these daunting
diseases and the resources that we provide to them for free.

We are also extremely proud of the important work our staff and volunteers do to support the
patients and their families who are facing the diagnosis of a blood cancer, to help them survive
and, hopefully, be cured.

Your questions about our relationship with our American partner afford me an opportunity to
celebrate a valuable partnership. Of course several major Canadian charities have similar
successful cross-border partnerships, but we believe ours is particularly effective. We benefit
enormously from their scale and experience. As an example, the access to the training and
knowledge they have gained in their much larger market over a much longer period is
exceptionally generous and directly benefits Canadian patients, families and researchers.

Finally, your characterization of our relationship with our outsourced marketing and design
partners is unfair to them and to us. That relationship, of course, predates my arrival by many
years. But in examining the work and costs, it strikes me that the quality of the service, the



Home Office, Canada
804 2 Lansing Square, Toronto, ON M2J 4P8
tel. 416.661.9541 fax. 416.661.7799

2

diverse array of communication and marketing products and the professionalism with which we
have been served would not have been possible to replicate internally for anything close to the
expenditures made.

Nonetheless, as part of my review of areas where we can lower costs, where we can take
advantage of new technologies and models, I have been discussing ways to find further
efficiencies with all of our suppliers. This is consistent with our commitment to being good
stewards of the precious funds donors entrust to us.

One of the advantages of being a veteran of charitable management in a variety of settings is
that I can bring that lifetime of learning to this role. LLSC is a great organization doing invaluable
work across Canada, but we can and will get better on every metric that I can find to make
improvements.

Please find below detailed responses to some of your questions. I am sure that you will
understand that some of your queries our relationships with researchers, for example are
not possible for us to respond to for reasons of privacy and or commercial confidentiality.
However, I hope you will find that the transparency and granularity of the information below
provides you with a clear and complete picture of the LLSC today.

Sincerely,

Shelagh Tippet-Fagyas
President, The Leukemia & Lymphoma Society of Canada


















Home Office, Canada
804 2 Lansing Square, Toronto, ON M2J 4P8
tel. 416.661.9541 fax. 416.661.7799

3

Responses to Toronto Star Questions, May 5, 2014

The Leukemia & Lymphoma Society of Canada (LLSC), headquartered in Toronto, Ontario, is
affiliated with The Leukemia & Lymphoma Society (LLS), headquartered in White Plains, NY,
USA, as of July 1, 2004. LLSC and LLS fund research to advance innovative, life-saving therapies;
support patients, caregivers and healthcare professionals through free blood cancer
information, education and support; and promote policies that help patients have access to
quality, affordable and coordinated care. LLSC and LLS touch patients through our 5 regional
offices across Canada and 56 chapters in the U.S. The shared mission of the two organizations is
to cure leukemia, lymphoma, Hodgkins disease and myeloma and improve the quality of life for
patients and their families.

To start off, could you please tell us, in as simple language as possible, how much of the
money raised by Canadian donors goes to the charitys good works? Following that, could you
please address the specific questions below?

Based on CRA data, the average fundraising cost ratio for the ten largest Canadian health
charities in 2013 was 41%. Our fundraising ratio as per our 2013 T3010 was 35%, with 57% going
to mission and 8% to administration costs. The CRA says that a fundraising ratio over 70% is a
cause for concern and we are far under that threshold.

We would like to know how much of those donor dollars goes to research. The LLSCs most
recent online T3010 states approximately $1.7 million was given to research. Your website
states more than $6 million was given to research in 2012. Could you please specify where the
$6 million comes from? Also, if it is $1.7 million given to research by the LLSC, that is about 11
per cent of total dollars raised in Canada. Considering the stated primary mission of the
charity is to cure blood cancers, can you please explain this percentage?

The mission of LLSC is to: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and
improve the quality of life of patients and their families. Our strategy to achieve the mission is
based on three areas of focus: research, patient support and advocacy.

In 2013 we spent over $4.1 million on public education programs, over $2.8 million on patient
support and over $1.8 million on research. Largely because of our strong relationship with our
U.S. affiliate The Leukemia & Lymphoma Society (LLS), Canadian scientists were also able to
attract over $4 million in international funding for a total research investment of over $6 million.

This reporting method for research investments is an industry standard that is endorsed by
watchdog organizations like Charity Intelligence.




Home Office, Canada
804 2 Lansing Square, Toronto, ON M2J 4P8
tel. 416.661.9541 fax. 416.661.7799

4

LLSC fosters the careers of aspiring blood cancer researchers by funding young scientists who
may have difficulty sourcing grant funding elsewhere, and innovative cutting-edge ideas in
need of seed funding. LLS often steps in with larger grants once ideas have blossomed with LLSC
funding, allowing scientists to take their blood cancer research to the next level.

Blood cancer research is working. Survival rates for many blood cancer patients have doubled,
tripled, and in some cases almost quadrupled, since the 1960s.

We would like to address the donation given to the LLSC by Beer Store employees who are
also members of the United Food and Commercial Workers Union. The website,
bottledrive.ca, states the employees, largely through the Beer Store Returns for Leukemia
bottle drive, raised approximately $1.7 million in 2013. As mentioned above, this is the same
amount the LLSC gave to research, according to the charitys T3010 as well as internal
documents outlining 2013 numbers. Could you please explain this? This appears to be a flow
through donation. Please tell us what fundraising efforts your charity took to raise the
money and any costs you associated with a donation that could easily have been sent directly
to the research group?

We are very proud of our long-term partnership with the United Food & Commercial Workers
Canada and The Beer Store and the donations they collect are used towards mission programs.
The fact that the amount raised by the bottle drive is similar to the research program
investment is simply a coincidence.

We are under the impression that the UFCW has raised additional money for the charity.
Could you please provide us with the total amount raised by the union for the last several
years, per year?

The total contribution from the UFCW in 2013, including the bottle drive, was $2.5 million.
Since we do not receive any government funding, we are extremely grateful for the
commitment and loyalty of the UFCW and The Beer Store employees, and the people who
support all of our fundraising efforts, including third party events supported by LLSC staff and
volunteers.

Could you please provide us with a list of researchers who have received grants from the LLSC
in the last several years, per year, and where they work?

LLSC provided operating grants to 24 scientists in 2013, located at 13 institutions across Canada.
In addition, we supported one project through the Therapy Acceleration Program, as well as
funding 11 medical students through summer studentships.

We would like to address a series of documents, attached to this email, which we have
obtained. Our understanding is that these are internal financial documents that were



Home Office, Canada
804 2 Lansing Square, Toronto, ON M2J 4P8
tel. 416.661.9541 fax. 416.661.7799

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prepared by controller Catherine Thomas. Could you please comment on the documents,
specifically the following points:

The document titled cost of raising money by type based on fiscal 2013 budget
states costs of running such events as Team in Training (0.85 per dollar raised), Light
the Night (0.62 cents per dollar raised), School and Youth (0.82 cents per dollar raised)
and the Pineapple Challenge (1.22 per dollar raised). Can you please explain this?

Like all prudent stewards, the management team at LLSC is constantly evaluating
different options to improve the performance of our operations so we can devote even
more funding to delivering our mission programs that have a direct impact on saving
lives. The materials you obtained were working documents and the quoted numbers
include mission, administrative and fundraising expenses, not purely fundraising
expenses.

Using that same cost of raising money document, which also states overhead costs
were not included, we added up total fundraising costs, including direct donor
benefits, and got $9.38 million. When divided by gross revenue we have 64 per cent
spent on fundraising. We are assuming (please correct us if we are wrong) that the
$1.7 million raised by Beer Store employees is included in the third party column. If
we subtract that donation, fundraising costs then raise to 75 per cent. Could you
please explain this?

As noted above, the cost of raising money is not equal to fundraising costs.

The money raised by the bottle drive is included in third party revenue.

Continuing with this point, numbers on the internal documents do not appear to add
up with the LLSCs audited financials and online T3010. The T3010 states 35 per cent of
revenue is spent on fundraising (the Canada Revenue Agencys recommended limit)
and your audited financials appear to have more money in two categories public
education ($4,126,540) and patient support ($2,481,768). Why the disparity? Also,
could you please explain what value donors are getting from the public education and
patient support categories?

The numbers in our audited statements and the numbers in the CRA filing both indicate
a total of $8,477,405 spent on mission.

The three elements of our strategy (research, patient support and advocacy) and our
mission were explained above.




Home Office, Canada
804 2 Lansing Square, Toronto, ON M2J 4P8
tel. 416.661.9541 fax. 416.661.7799

6

Public Education programs inform non-patients about blood cancers; ensures healthcare
professionals are up-to-speed on latest advances and the free support programs LLSC
provides to patients; and advocacy efforts focused on access to effective treatments and
diagnostics. For example:
Communication materials and online resources designed to inform the public about
blood cancers
Educational information sessions for healthcare professionals and non-patient
groups
Creation/distribution of community resource guides
Writing health articles & updates
Health exhibits at fairs, professional conferences, etc. For instance, LLSC exhibits at
the Canadian Association of Nurses in Oncology help ensure nurses are aware of
how LLSC can support their patient care efforts.
Participating and/or conducting health education training for staff and volunteers
Gathering data and reporting on relevant health issues and statistics on blood
cancers
Providing the patient voice to the oncology drug approval process

Patient Services represents activities performed or programs conducted for the purpose
of providing physical, emotional and other assistance to individuals who are affected by
a blood cancer. LLSC provides support to over 8,000 people each year. Support is
provided from diagnosis right through survivorship or bereavement. This includes:
15 Support Groups functioning across Canada
Trish Greene Back-to-School helps educators and parents ensure children have the
optimal back to school experience after cancer treatment
Over 300 First Connection matches where patients are connected one-to-one with a
highly-trained survivor for peer support
Patient education programs covering a wide spectrum of topics from disease-
specific (i.e. Understanding Leukemia) to coping mechanisms (i.e. strategies to help
with stress & anxiety) to research advances (i.e. The Future of CLL Treatment in
Canada) to survivorship issues (i.e. Dealing with Treatment-Related Infertility)
Providing one-on-one information & support to patients/caregivers
Connecting patients to community resources so they have as much support as
possible through their cancer experience
Printed disease information dissemination to patients directly or through healthcare
organizations (hospitals, cancer centres and other non-profit organizations)
Determining gaps in service and planning on how to improve LLSC support for
patients/caregivers



Home Office, Canada
804 2 Lansing Square, Toronto, ON M2J 4P8
tel. 416.661.9541 fax. 416.661.7799

7

Referring to the document dealing with our offices, do you believe the rent costs are the
best and most efficient use of charity dollars? For example, one of the two Toronto offices
costs $13,021 per month for 11 employees. We have also been told that one of the two offices
in Montreal was nicknamed the Taj Mahal because of its opulent decor. Would you be able
to provide us with a cost breakdown of how much money was spent outfitting the new
Montreal office on St. Maurice?

LLSC has eight physical offices across the country. To reduce costs the national office will be
combined with the Ontario Region office in northeast Toronto in 2014 resulting in cost savings.
LLSC closed the Ottawa office in January, 2014, with staff serving that geographic area now
working from home. As leases come to term, office space is evaluated to determine if the space
still meets organizational needs and is enabling LLSC to better help patients.

The office referred to in Montreal is a sub-lease that we were able to rent at a very competitive
rate. The only modifications LLSC made to the office were painting and the purchase of some
basic furniture.

Referring to the document titled LLSC FY14 Budget v FY13 Actual Consolidated travel costs
are $270,251. Meeting costs, which we understand are things like hotels and food, are $347,
205. There appears to be about 70 employees with LLSC, making travel and meeting costs
$8,820 per person. Can you please explain this?

The document titled LLSC FY14 Budget v. FY13 Actual Consolidated is a planning document,
containing preliminary numbers that have not been released to the public. The Travel & Meeting
costs include all costs associated with the execution of the patient support component of LLSCs
mission. Travel is essential to delivering patient support and education, as outlined in the LLSC
mission statement, in a country as geographically vast as Canada.

Regardless, the LLSC strives to be as efficient as possible. Significant review of travel in the first fiscal
quarter of this year has led to over $100,000 in savings. Meeting expenses have also been
significantly reduced in this fiscal year, to ensure more money can be applied to the LLSCs mission
programming.

We have spoken with several people who have knowledge of the inner workings of LLSC and
would like to address some of the issues they have raised. There is a clearly expressed
frustration at what is perceived to be a great deal of unnecessary travel costs. For example,
monthly meetings in the U.S., trips to scout events in New Orleans or Florida even though the
event would not be applicable to Canada, or a request to send staff and volunteers to New
York for a short meeting on how to train pregnant women who are participating in runs. Also,
a yearly conference in either Orlando or Washington which staff and volunteers attend. The
people we have spoken to also explained that travel across Canada and the U.S. for
conferences and meetings is not optional for staff. Can you please comment on this?




Home Office, Canada
804 2 Lansing Square, Toronto, ON M2J 4P8
tel. 416.661.9541 fax. 416.661.7799

8

The American organization of The Leukemia & Lymphoma Society has been very gracious in
extending invitations to volunteers and staff of LLSC to attend conferences in the United States.
LLSC generally pays only for incidental travel expenses.

Participating in the American-run conferences is an extremely cost-effective way for volunteers
and staff at LLSC to grow their knowledge and skills. Applying new knowledge and skills in the
Canadian context continues to grow public awareness and support for Canadians touched by
these devastating diseases.

We have also been told of high expenses for meals. Has LLSC ever expensed meals that include
alcohol? Is this a regular occurrence? Would you be able to provide us with Amex expense
reports?

In the past, the LLSC has occasionally expensed meals that included alcohol. In the LLSCs
continued effort to improve efficiency, the Board of Directors approved a 2013 travel policy
which prohibits alcohol and limits meal expenses to $50 a day.

The culture at LLSC has been explained to us as dictative and intimidating as well as top
heavy with decisions regularly made out of the U.S. and national head offices that, at times,
set unrealistic goals. Could you please comment on this categorization? As well, our
understanding is that there have been a series of resignations and firings (often without
notice) in the last several years. Are you able to provide us with the turnover rate in the LLSC?
Would you agree with the categorization that the turnover rate is very high?

The LLSC benefits from its relationship with The Leukemia & Lymphoma Society in the United
States. The LLSC does not, however, rely on the American organization for direction in terms of
management or policy. The LLSC is proud to deliver support and programming tailored to
Canadians.

To speak to the issue of turnover, a recent internal study found annual turnover rates within the
LLSC to be congruent with rates in the Canadian charity sector: about 10% for management
positions and 20% for entry level positions. We believe our turnover rate is within the
acceptable range.

We would like to address training. We have been told that staff and perhaps volunteers are
trained in the U.S. by the American arm of the charity, LLS, and that the Canadian arm pays for
this training. Could you please explain how this works? And how much money the Canadian
arm has paid the U.S. arm each year in the last several years for training, per year?

As described in a previous question, The Leukemia & Lymphoma Society in the United States
generally pays for Canadian participants to attend conferences. It is far more efficient for us to
participate in these training opportunities than to fund independent sessions on our own.




Home Office, Canada
804 2 Lansing Square, Toronto, ON M2J 4P8
tel. 416.661.9541 fax. 416.661.7799

9

We have in our possession a Design and Brand Consulting Services contract from Spin
Design, a company operating out of Milton, dated March 20, 2013 and signed by past
president Nancy Allen. This agreement supersedes a past agreement. The contract stipulates
Spin Design would be paid over $18,000 per month to dedicate up to 245 hours per month to
LLSC. What services were provided for this money? Did Spin Design regularly work 245 hours
per month? Would it not be more cost effective to hire someone internally to deal with design
considering this adds up to over $200,000 annually? Also, would this service be included in
professional fees. Referring again to internal document LLSC FY14 Budget v Fy13 Actual
Consolidated we see $2,077,549 spent on professional fees. Could you please explain what
services fall into this category?

SPIN Design entered into a confidential business contract with the LLSC and any discussion of
the details of the contract would be in violation of the spirit of the agreement. SPIN Design
serves as a multi-person marketing unit for the LLSC, providing products and counsel to assist in
the provision of services, beyond the LLSCs internal capabilities.

Choosing between purchasing services and developing internal capabilities is a challenge faced
by many charitable organizations and it is one that the LLSC will continue to review. National,
community-oriented organizations like the LLSC also require professional services such as
translation, online donation processing, website maintenance and accounting. The Professional
fees category of the LLSC FY14 Budget v FY13 Actual Consolidated planning document
includes fees for the services listed and others.

We would like to address the patient support side of your mission. Please describe the
charitable or good works your organization provides. Our understanding is that the backbone
of patient support services is five patient support positions. Is this correct? Could you please
explain their role and salary range? Has the charity shifted in recent years from hiring
coordinators that have more qualifications (for example, a Masters in social work) to hiring
those with fewer credentials for a community worker role? If true, do you think this impacted
services provided?

The LLSC provides a variety of support services to patients, through six staff across the country
and mission staff at the national office. When hiring patient outreach staff, the LLSC does not
mandate a particular background for candidates. The goal is to educate and empower patients
to make appropriate treatment decisions, connect patients to local community resources and
maximize the efforts of local volunteers. Service has not been impacted.

Additionally, Canadians affected by blood cancers can call a toll-free number to speak to an
information specialist about diagnosis, treatment and survivorship.

We would like to address the charitys model. One issue that was brought to our attention is
that the LLSC model may be outdated and that the focus on campaigns like marathons is
becoming increasingly difficult for charities to do well at. Also, that by the time LLSC entered



Home Office, Canada
804 2 Lansing Square, Toronto, ON M2J 4P8
tel. 416.661.9541 fax. 416.661.7799

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this market in Canada it was already oversaturated by other long established charities. Could
you please comment on this? Specifically, is the charity looking at other models?

The LLSC has been taking steps to diversify revenue sources and ensure the LLSCs initiatives
address the distinct nature of the charitable giving in Canada.

Lastly, since your organization is so closely affiliated with the U.S. we would also like to
address privacy issues which often arise with cross-border collaborations. Has financial donor
data from Canadian patients and/or donors ever been store on U.S. servers in the U.S.? Could
you please explain M360 Canada?

LLSC is compliant with CRA guidelines regarding the storage of financial data. LLSC patient and donor
information is securely stored in Canada.