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July 29, 2009

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July 29, 2009

I"m 57 and a 22 year survivor. LBBC is the only bc organization with which I volunteer because they give direct, useful, personal care to ANY WOMAN who needs information. And the web site is an excellent source of very current information. In addition, the LBBC staff is appreciative of all of their volunteers-it really feels like a team effort. I've worked the phone hotline for a few years, speaking with women in various stages of treatment and sometimes with caregivers. If I am not able to answer a specific question or request, LBBC gets an answer within one day, every time. It really is a first class organization.

The Great!

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

the voices of the women who get help from the phone hotline. They feel connected and hopeful.

Ways to make it better...

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

need to be two people!

More feedback...

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

I always learn something new and I always feel that I've received more than I 've given

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

smart, caring, committed.

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

help so many more women who desperately need help.

Ways to make it better...

I had more time to volunteer.

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

money, money and money. They could touch so many more lives if more financial resources were available to them.

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

LBBC really is a GREAT NONPROFIT.

When was your last experience with this nonprofit?

2009

July 29, 2009

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July 29, 2009

When I was diagnosed with metastatic breast cancer three years ago, it was very hard to find any information on advanced breast cancer. LBBC is a valuable resource for anyone with breast cancer but especially for those of us with advanced breast cancer. LBBC always have informative speakers for their teleconferences, their website is very "user friendly" and their newsletters are great. They cover the entire spectrum of topics not just about the disease itself, but on topics like family and the workplace. They are a lifeline for anyone looking for the most current and reliable information.

More feedback...

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

that it has given me confidence in living with advanced breast cancer. I have more knowledge about the disease and current treatments and feel that I can become more active as an advocate for patients living with advanced cancer.

When was your last experience with this nonprofit?

2009

July 28, 2009

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July 28, 2009

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.

The Great!

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.

Ways to make it better...

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.

More feedback...

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?

2009

July 28, 2009

more

July 28, 2009

I look forward to getting regular emails from LBBC. There is always information that I have been wondering about or worrying over and LBBC provides just the right answers for me. Keep up the great work!

The Great!

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

improving the lives of survivors - both newly diagnosed and beyond.

Ways to make it better...

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

More feedback...

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

the regular emails which include experts in the field.

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

excellent

Ways to make it better...

i wish i lived closer to philly

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

I've been a participant in LBBC's conferences, teleconferences, and a volunteer on their helpline. They provide the best and newest information on treatment, diagnosis, psychsocial aspects of having breast cancer, and were the first to address the needs of those of us with late stage, or metastatic breast cancer. The staff is bright, qualified, committed, and infused with the mission of doing all that they can to help translate medical information to the lay public in a way that is understandable, useful, and that helps women become their own advocates in their breast cancer experiences.

The Great!

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

Improving womens' knowledge of and coping with breast cancer, and it's diagnosis, treatment, emotional and physical consequences.

Ways to make it better...

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

Use my voice to lobby Congress for recognition of metastatic BC, the need for more mets-specific research, and help for those of us living with it. Lobby for waiving the 29 month wait for Medicare eligibility after Social Security Disability

More feedback...

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

The conferences that they develop are some of the best that I've ever attended. They get nationally recognized speakers, and cover essential topics well.

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

Bright, committed to bettering the lot of people with breast cancer, and helping them to become more educated about BC issues, and better advocates for themselves.

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

Provide conferences in other areas of the country, increase it's ability to provide financial assistance to BC patients who need help, and fund research in areas that have been neglected, ie: emotional impact of BC diagnosis, treatment, and effective help

Ways to make it better...

If I qualified geographically for one of their grants when I'd lost my job d/t a liver tumor.

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

As with many charitable organizations, I'm sure that they could do much more good with more funding.

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

LBBC is a top-notch organization, and they do a great amount of good for those with breast cancer, and those who care for and about us.

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

I love Living Beyond Breast Cancer. They have informative teleconferences on various topics addressing issues concerning breast cancer survivors. They include the newest therapies, returning to work issues, how to cope with side effects, etc. They also send free bochures on topics including lymphodema, understanding pathology reports, etc. It is a valuable resource for anyone just being diagnosed with or surviving breast cancer.

The Great!

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

mostly in my peace of mind; knowing and seeing how much research is being done to fight bresat cancer and to help survivors cope with life after diagnosis.

Ways to make it better...

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

Hold more events around the country.

More feedback...

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

Information is sent right to my computer and I can listen to the professional teleconferences in the comfort of my home, or get the transcripts to read later. It keeps me very informed.

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

Haven't met any. All exposure is via computer.

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

Reach more people.

Ways to make it better...

Knew about it at the time of my diagnosis.

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

Don't know, but like most non-profits, it's probably financial.

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

I was so proud to see my Radiation Oncologit's name as an Advisory Committee Reviewer. If she attached her name to this organization, I know it's top notch.

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

This organization provides incredible, free brochures on many cancer topics. Their brochure on understanding pathology reports gave me the information I needed to catch a critical error in my own pathology report. This changed my course of treatment and was a potential lifesaver.

The Great!

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

women gaining knowledge about their disease.

Ways to make it better...

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

be very satisfied with the assistance that was being provided.

More feedback...

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

their teleconferences are informative and can be replayed.

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

supportive and helpful.

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

extend its programs.

Ways to make it better...

booklets I want now were available.

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

funding.

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

thanks!

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

Living Beyond Breast Cancer has given me the Support Group that I desperately needed. They have supplied me with information that I would not have gotten any where else. I am improved and informed by their choice of on-line speakers and publications. GREAT JOB LBBC!!

The Great!

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

the broadening of my knowlege of my condition and the strengthening of my confidence in my treatment of my breast cancer.

More feedback...

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

the availability of information. Not all lectures or publications pertain to my situation and I can pick and choose at my own discretion what is useful to me.

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

There are not enough stars to rate this organization. I am 3rd generation woman affected by cancer. Both my mom and my sister have passed. Because of the impact this disease has had on my family I have decided to fight it with all I have. Because of that I am more than a survivor; and I will live and thrive inspite of it. LBBC is responsible for helping me stay informed, positive, and connected. And I dont even live in PA! Your teleconferences are great, and I can listen to them again and again. Your annual conferences in Philly are the best. I'm still living and feeding off the last one! Thank you, thank you for all that you do!

The Great!

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

in helping us better understand triple negative cancer, cancer and african american women, working while fighting cancer. YES! LBBC, YOU ARE GREAT!!!

Ways to make it better...

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

Step back and give you all the resources I could find to help you keep doing what you are doing! You made me stop crying (feeling sorry for myself because my mom and sister werent around). I felt and still feel empowered. Thanks again.

More feedback...

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

Even though I live in Maryland, your resources are often just a touch away (on the internet). I am able to share information with my friends in NJ, FL, and CT. Way to go LBBC!

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

Great people. I felt diginity and respect from them. They made me feel like it was o.k. to laugh, cry or whatever. No question was too stupid...Empowerment.

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

Expand to Maryland (I did say that already, didnt I?)

Ways to make it better...

I lived in Philly (LOL)!

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

$$ to grow into Maryland (where I live). I have the wellness community, and other places, but LBBC did it!

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

Please keep up the great work. It's not easy, and it may not be for a while. But please know that you have made a difference in the lives of women and men around the country and around the world.

When was your last experience with this nonprofit?

2009

July 28, 2009

more

July 28, 2009

LBBC has been the most helpful educational program I have found in the 11 years of fighting cancer. It keeps me in the real world of the living while being up to date factual about my medical condition. It allows me to choose the specific aspects of the disease that I am dealing with at the moment and empowers me with the knowledge that I need without overwhelming me.It is truly a great backup to my medical treatment,and I recommend the program to all friends who face the terrifying CA diagnosis.

The Great!

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

the way that I am living my life with cancer and am able to encourage otheres with the disease.

Ways to make it better...

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

Give myself a huge pat on the back and keep on doing it.

More feedback...

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

I can pick and choose from the variety of educational offerings that are most helpful to my condition and personality.

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

The doctors who brought the latest research down to my level of understanding and the editors who got it to me.

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

It could help with the research and getting the results to the medical world and the patients.

Ways to make it better...

I had access to printed material to give to newly diagnosed friends who have not heard about LBBC.

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

To spread their help beyond the Philadelphia area to women all over the USA and beyond. They already do this with the internet and mailings but the gatherings etc might be more far reaching.

When was your last experience with this nonprofit?

2009

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