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June 9, 2010

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June 9, 2010

I was diagnosed with this RARE lung disease almost ten years ago. How wonderful that the LAM foundation was already in place and able to answer many of my questions. Because of the LAM Foundation, I was able to connect with other "lammies" and this enabled me to feel empowered. I was not alone and I would do my best in this challenge like them! Sue and her staff welcomed me into the fold and I felt like it was going to be okay.

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The Great!

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

Because of the LAM Foundation, I felt as though, I was not alone in this rare disease! Using the LISTSERVE I was able to connect with other "lammies" and this brought me a great deal of comfort! The staff are the most caring people and so very kind!!!

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How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2000

June 9, 2010

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June 9, 2010

In November 2009, I had an incidential finding of cysts on my lungs. On December 23, 2009, following a lung biopsy the week before, the diagnosis was confirmed - I had LAM (or otherwise known as lymphangioleiomyomatosis). Since it is considered a rare disease, there was not a lot of information available and what was available, was not very positive. My pulmonologist referred me to the LAM Foundation the same day I received the official diagnosis. When I called on 12/23 to speak to someone at TLF, I was greeted by Sally Lamb. Within a week, I received an amazing amount of materials and information. The materials came in a two - three step process which was very helpful. Otherwise, I might have tried reading everything which would have only overwhelmed me more. Even after receiving the materials, people at The Lam Foundation are always available to me for questions that might rise or just to listen when I'm having a difficult day. They also have a LISTSERV that's available 24/7 for all patients which provides the opportunity to speak to others with the same disease. The LAM Foundation is amazing group of people and I feel very fortunate to have TLF available to me. The Executive Director even told us at LAMposium that she would happily accept losing her job if it meant that a cure was found and the foundation was no longer needed.

The Great!

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

just the amount of education and care that I have received since being diagnosed with LAM in December 2009.

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How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 9, 2010

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June 9, 2010

Since being diagnosed with LAM in 1998, I felt so alone. Hey, there are only 2000 of us diagnosed with LAM in the WORLD!! Don't you see how rare this women's only lung disease is? The LAM Foundation has brought us all together through their inception 15 years ago. This organization is a one of a kind!! It just isn't an office, it is a staff that makes sure each & every woman does not feel alone in this world. They keep us connected!!

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The Great!

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

Getting a call after I was diagnosed from the head of the Foundation. In attending the LAMposiums that feature not only the LAM women, bur physcians, researchers, & scientists so we can talk to each other. in asking for help with LAM fundraisers.

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

They really care!! Each & everyone of the staff members care about each one of us.

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

Kind, Caring, Loving, Unselfish, Compassionate.

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

fund more research to find a cure for this debilitation women's Only Lung disease, so we wouldn't have the only option of a double lung transplant if our disease got worse.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 3, 2010

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June 3, 2010

I was diagnosed with LAM in May of 2010. It was a lonely road. My PCP read 2 pages from a website when LAM was suspected. About 2 weeks later, IT was the diagnosis. At that time I contacted the LAM Foundation and got a call back right away. My mind was eased quite a bit! They were encouraging and knowledgeable. It was suggested I connect other LAM women who further eased my mind. THIS IS SCARY, but with the support of the Foundation it's not so lonely.

The Great!

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

support over the phone, thru email and mail.

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How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 3, 2010

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June 3, 2010

I was diagnosed with LAM in 2008 and although I tried to deny it for awhile, when I was ready - The LAM Foundation was there to help, encourage, and support me. I then knew there was hope and a glimpse of a longer life because of what these great souls are doing every day to help women like me.

The Great!

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

assistance with my fundraiser. They provided me with helpful information, resource materials, and ideas. Great support!!

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How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

June 2, 2010

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June 2, 2010

I was diagnosed with LAM in 2007, and after discovering a lot of out dated information on the internet, turned to the LAM foundation. I was given much needed emotional support from the staff as well as information and contact info for fellow LAM patients. LAM is such a rare disease, and many patients who have LAM, do not know it. The foundation also works on increasing awareness of this disease and it's symptoms. Without this foundation, I would not have the resources that I have been exposed to.

The Great!

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

-having a LAM liason -finding a LAM clinic in my area -receiving literature to distribute to raise awareness. -peace of mind knowing I can call the foundation if I have questions. -receiving the support through the LAM ListServ.

More feedback...

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

June 2, 2010

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June 2, 2010

I have LAM, and the week that I was diagnosed, I contacted the LAM Foundation and have been so greatful for them! They are all so kind and caring, and have made things so much easier for me. They have offered literature and advice more times than I can count. I also am involved in the MILES clinical trial through the LAM Foundation, and it has also been my saving grace. The LAM Foundation is such a greatly put together foundation. Very organized and incredibly helpful. I am so blessed to know of them and have them as a resource!

The Great!

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

my every day life!

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How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

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