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June 21, 2011

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June 21, 2011

In February of 1996, my husband at the time underwent triple by-pass surgery @ Jefferson Hospital. While he was recuperating, I went for my baseline and was informed that same evening that there may be a problem. On March 27, 1996, I underwent a mastectomy & the beginning stages of reconstruction also at Jefferson Hospital. Our daughter, Alison, was 5 at the time.

At some point during my recovery, someone told me about LBBC and I started going to their "Young Survivors" meetings, which at that time were hel at the Narberth Fire Station. The crowd was small and the surroundings were a little bleak. In the meantime, I started to volunteer for LBBC in their office in Narberth. My first event was at the King of Prussia Mall, which was an art exhibit having to do with women affected by breast cancer. That led me to help with many more functions. One of my favorites was calling area florists & asking them if they would donate a centerpiece for our upcoming annual gala which was held at the Crystal Tea Room that year. What a pleasant surprise when each & every one I called said absolutely yes they would and beautiful the room looked with an array of gorgeous flowers that were donated to such a great cause.

Aside from volunteering for LBBC and after discussing how we could make the Young Survivor's meetings more attractive, I asked what they thought of the my hosting the meeting at my house, which at the time was in Lafayette Hill. We decided to make it a Pot Luck supper with a guest speaker for each meeting, which was held every 6 weeks or so. I can tell you that my home was filled with women from their early twenties to I think the cut-off age at that time for a "Young" survivor was maybe 40ish. It gave me such joy to open up my home to these women who were all going through the same ordeal. Many friendships were formed, tears cried, information gained and just a forum where they could experience the joy & pain of others.

As you may know, at the annual Gala each year, four women are chosen to be honorees and I did get a phone call I think in 2001 with the news that I was chosen for the upcoming gala to be one of those women. What an honor and a privilege. During this time, my marriage was ending and it was a difficult time, but just like breast cancer, I got through it. The Gala night came and my family & friends were all there along with my daughter, who was 10 at the time. I didn't have thank you speech prepared, but Alison told me, "Mom, just wing it" and that's what I did. What an honor!

So, 15 years later, I am cancer free and my life has changed in some ways, but will never forget my time spent with the wonderful people at LBBC and the wonderful experiences I enjoyed being a part of such an exceptional organizaiton.

The Great!

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

The people that I met and the joy I felt in knowing that I was in some way helping others.

Ways to make it better...

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

No changes to be made.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Definitely

Did your volunteer experience have an effect on you? (teaching you a new skill, or introducing new friends, etc.)

Absolutely. I met new friends, I felt as though I helped young women by opening up my home for the Young Survivor's Meetings, and by putting myself out there saying I had breast cancer and I made it through, maybe it helped someone else going through the same.

When was your last experience with this nonprofit?

2001

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 28, 2009

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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 22, 2009

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July 22, 2009

I was initially diagnosed with breast cancer in 1982 and then again in 2003. I turned to Living Beyond Breast Cancer and I have never looked else where. I get so much support; both intellectually and emotionally, from the staff as well as from the amazing women I have met there who share my disease. The organization is so inspiring that I have even chosen to work as a volunteer.

The Great!

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

my own personal experience. Everyone is willing to listen and find answers if needed. The conferences are informative and worth attending and the energy is amazing.

Ways to make it better...

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

continue to expand on information related to metastatic breast cancer. We seem to be a growing segment of the breast cancer population.

More feedback...

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

getting to know the staff and the other volunteers who share my disease. They are "my support group."

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

informed,supportive and interested in helping. Every one seems willing to do whatever needs to be done to get the job done.

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

I don't know about salaries but I assume that staff is under paid for the amount of work that is done. Many work evenings and weekends.

Ways to make it better...

I don't know what could be done to make my experience a better one. A cure perhaps?

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

meeting the needs of the growing number of women who need are being diagnosed with breast cancer.

When was your last experience with this nonprofit?

2009

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