Metastatic Breast Cancer

Charity Review: Dr. Susan Love Research Foundation

October 14, 2016
Reviewing the charity, Dr. Susan Love Research Foundation.

One of the best ways to help in the fight against cancer is by making a donation in support of cancer research. But deciding which organizations will make the most effective use of our contributions requires a little homework.

I’ve shared my ideas in earlier posts on contributing to breast cancer charities and focusing on charities that support cancer research specifically. This post is the third in a series in which we’re taking a closer look at individual charities that focus primarily on cancer research.

When it comes to donations, making a choice based on value for our money means considering several factors for any individual charity. These include how the organization uses the money it raises, its financial health, and how transparent it is about what has been accomplished with the contributions it has received. In this post, we’ll review the Dr. Susan Love Research Foundation, including its mission and approach, history, notable financial facts and results reporting.

Dr. Susan Love Research Foundation: It’s Mission and Approach

The Dr. Susan Love Research Foundation stands out for the special emphasis it places on involving the public in cancer research.

The Foundation says that its mission is “to achieve a future without breast cancer by engaging the public and scientific communities in innovative research on cause and prevention.” DSLRF both performs project-based research itself and also facilitates research conducted by others through its Army of Women Program.

The organization also emphasizes education. It works to empower patients by providing digestible information about breast cancer and interpretation of breast cancer science through videos, webinars and blogs featuring Dr. Susan Love. Dr. Love, the Foundation’s President and Chief Visionary Officer, is a surgeon and expert on breast cancer and women’s health.

The Foundation’s Scientific Advisory Committee, composed of healthcare professionals, researchers, advocates and others stakeholders, reviews requests from scientists seeking Army of Women volunteers to participate in studies and provides guidance on other work of the Foundation.

The Organization’s History

The Foundation was started in 1983 as the Santa Barbara Breast Cancer Institute by Dr. Otto W. Sartorius, a breast surgeon and researcher with a special interest in understanding what causes breast cancer and learning how to prevent it.

After Dr. Sartorius passed away in 2004, the Foundation’s Board sought a medical director who would keep his vision alive and expand the scope of his work. Dr. Love was chosen as the new medical director, and eventually the name of the Foundation was changed to reflect her leadership.

The Army of Women Program was launched in 2008 through a partnership between DSLRF and the Avon Foundation for Women. The program recruits women (and men), whether or not they’ve had breast cancer, to be a resource for researchers. Approved researchers, depending on the nature of their project, may interview members who’ve chosen to participate in the specific project and/or obtain from them relevant medical records, blood or tissue samples. As of mid-2015, over 379,000 women and men had registered for the program.

In 2012, DSLRF launched another major initiative, the Health of Women Study. The HOW Study explores issues in breast cancer using an online cohort approach to question people over time using a series of questionnaires. Recent questionnaires have explored quality of life for individuals treated for breast cancer and a new hypothesis about the possible relationship between bacteria and the breast. As of mid-2015, the HOW Study had over 53,000 active participants.

Major Program Areas, Expenses and Funding*

DSLRF’s major program areas are clinical research, the Army of Women Program, the Health of Women Study and education.

Of the Foundation’s total expenses, 81% were spent on its programs and services, 7% went to administrative expenses and 12% were allocated to fundraising.

DSLRF received a total of $2 million in public support and revenue for the fiscal year that ended June 30, 2015, including about $250,000 raised through the organization’s annual Walk with Love 5K walk/run fundraising event.

Ratings from the Charity Watchdogs

These are the ratings DSLRF has received from charity rating agencies:

Charity Navigator: 4 stars (highest rating)
BBB Wise Giving Alliance: Accredited Charity – Meets Standards (highest rating)

Results: What Does the Charity Report?

The DSLRF website describes four collaborative research projects currently underway that are being driven by the Foundation itself. These include:

  • Health of Women Study, described above.
  • Metastatic Breast Cancer Collateral Damage – this project is engaged in capturing the life changing impacts of metastatic breast cancer, using a HOW Study questionnaire to document them and developing a set of recommendations aimed at improving quality of life for metastatic breast cancer patients.
  • Mapping the Breast Ducts – this project aims to improve understanding of the breast ductal system to enable surgeons, especially those operating on women with DCIS, to identify the area of the breast involved based on ductal patterns.
  • Self-Reading Portable Ultrasound – with funding from NIH, this project is developing a portable device that can be used in developing countries to triage women with breast lumps to distinguish between benign lumps and those that might be malignant and should be biopsied.

The Army of Women Program has its own website, which includes a list of current projects underway through the program, along with project details. There is also a list of the closed projects with a description of each project. The Program hosts periodic webinars, in which researchers who have conducted studies involving AOW volunteers discuss the findings of their research.

The DSLRF blog provides updates on ongoing research including, for example, these recent articles:

  • an CVO report from Dr. Love on the rationale behind and recent developments in the Mapping the Breast Ducts study.
  • findings from a study on breast ductal fluid led by Dr. Love that show microbes may be linked to breast cancer development.
  • a brief overview and link to the April 2016 AOW researcher webinar featuring Dr. Shelley Hwang, principal investigator for a study on patient-reported outcomes after choosing contralateral prophylactic mastectomy.

Recent Initiatives and Additional Reading

A recent article in the ASCO Post discusses DSLRF’s ongoing research on the collateral damage of breast cancer treatment–research that Dr. Love says was inspired by her own experience as a cancer patient when she was diagnosed with acute myeloid leukemia 3 1/2 years ago.

*Sources: DSLRF’s website, audited financial statements and IRS Form 990

Image Credit: one photo via Shutterstock

This article was originally published at the “Article” source noted above and distributed by The Tutu Project for informational purposes only.

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