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Beverly Fretz-Brown

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1 reviews

Review for Living Beyond Breast Cancer, Bala Cynwyd, PA, USA

Rating: 5 stars  

LBBC is the best organization I have found for delivering current information on all stages, effects, and treatments for breast cancer, particularly metastatic cancer. Through their teleconferences, transcripts, and other forms of communication, they provide a forum where leaders in the field discuss specific issues such as pain management, the impact of new clinical trials, conventional best practices, and much more. LBBC is a patient-advocate. Their information is understandable but sufficiently sophisticated that you can become a real member of your treatment team.

I've personally experienced the results of this organization in...

my engaging more effectively in my own cancer treatment and helping others do the same by discussing LBBC reports with friends with cancer. LBBC gives you the tools for responsible patient empowerment.

If I had to make changes to this organization, I would...

Continue and expand its reach, holding at least one of its conferences on the west coast. I would also find a way to collaborate with the Kaiser Foundation or others similar in preventive treatment and research.

What I've enjoyed the most about my experience with this nonprofit is...

I am much more knowledgeable about this disease and can discuss its treatment (pain, clinical trials, different chemotherapy and radiation regimens) with medical professionals.

The kinds of staff and volunteers that I met were...

knowledgeable and responsive. They treat people with cancer with respect and hope.

If this organization had 10 million bucks, it could...

expand its conferences and seminars throughout the United States and add more teleconferences on new areas of interest, such as biologic research. It could also engage in certain types of research - patient-based - for which is already has a base.

Ways to make it better...

LBBC had provided more information on metastatic cancer. Whether because of my comments or not, the nonprofit is now doing this. (Women with metastatic cancer are dealing with the incurable part of the disease.)

In my opinion, the biggest challenges facing this organization are...

financial. In any nonprofit in the cancer field, one must not have to face the choice of losing one's independence by become dependent on drug company sponsorship.

One thing I'd also say is that...

The organization is a slim and creative assemblage of people whose actions are directed by the kinds of information its participants need to know.

When was your last experience with this nonprofit?


Role:  Donor & I support the nonprofit's good work by contributing monetarily and providing feedback on metastatic cancer experiences.