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June 17, 2011

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June 17, 2011

I am Nadin and I have LAM. I think the LAM foundation is a great nonprofit because after I was diagnosed; the LAM foundation was my doctor’s point of information and also my family’s. Since it is a rare disease, many doctors have no clue about it. I have learned with experience now, to print the basic information from their website and bring this to every new doctor that I have to meet! They practically teach you about the disease through their website, they connect you to LAM doctors so you can be evaluated, they share stories and connect you to other LAM patients, they gather money for new research and find a cure, they create awareness about the disease here and (slowly) abroad. I remember when the founder of the foundation called me to invite me to the LAMposium . I think she does this to every new patient that is diagnosed, and to me that shows that they really care about the patients. Also with the creation of the LAMposium, which is a 3 day event (and patients don’t have to pay anything, other than getting there) you get to meet the docs that are doing the research and ask tons of questions!

The Great!

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

in knowing what to expect when I have had lung collapses and not freaking out, and also suggesting to some doctors what is the best thing for me becuase they lack the knowledge about LAM. Also, successfully getting a Lung Transplant and making my disease something worth fighting for.

Ways to make it better...

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

I would have a translate version of everything like their website, handbook, DVD, etc.

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

How did you learn about this organization?

When I was diagnosed, the doctor found their website and he told me about it.

When was your last experience with this nonprofit?

2011

June 14, 2011

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June 14, 2011

I know about the LAM foundation because my little sister Nadin was diagnosed when she was 23 years old. After her diagnosis I learnt all I could in their web page. When my sister was in the hospital for three month because of several lung collapses, the book with stories about women with LAM help my family find hope during this hard time. The foundation is great directing you to the right people that help you deal with this devastating disease.

The Great!

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

finding doctors and legal cousel

Ways to make it better...

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

the web page should have a spanish version

August 21, 2012

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1 previous review
June 14, 2011

I'm a 25 year old LAM patient from New York named Lisa, facing a double lung transplant because my lungs are beyond saving at less than 30% function. The LAM Foundation has put me in contact with othe... more

August 21, 2012

When I was diagnosed with LAM, I felt so lost and alone.. I did the online research and was filled with dread. I found one foundation dedicated to help people like me, the LAM Foundation, and I don't know where I'd be if not for them. I'm still very sick, on oxygen and in need of transplant -- but these people give me information and hope. They are always no more than an e-mail or a phone call away.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

June 14, 2011

I'm a 25 year old LAM patient from New York named Lisa, facing a double lung transplant because my lungs are beyond saving at less than 30% function. The LAM Foundation has put me in contact with other women like me, and made me feel less alone. Although this disease is rare, serious, and fatal without a cure -- just having a support group and an amazing Foundation to turn to is invaluable. I couldn't imagine going through this by myself. We need to make the general public aware of LAM, because despite our efforts, it is still very largely unknown in the general public.

The Great!

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

LAMposium, online, over the phone.

Ways to make it better...

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

Somehow make the general public more aware of it's existence.

June 14, 2011

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June 14, 2011

My sister Susan Mennillo was diagnosed with this rare fatal lung disease a few short months ago after being told it was asthma for a few years. She had an open lung biopsy and that is how they discovered she has it. It is cysts that develop in your lungs and eventually grow to the point where you wind up on oxygen and then eventually suffocate or have your lungs collapse, etc. Please pray that the foundation/doctors/scientists find a cure so that my sister will have a longer life than is expected with this disease. I pray everyday for my sister and others who are struggling with this that they may be cured. There are cures for cancer, heart disease, etc. WE NEED A CURE FOR LAM LUNG DISEASE.. PLEASE MAKE A DONATION/VOLUNTERR WHATEVER IT TAKES TO HELP IN THIS CAUSE...... Kathie Youtz - Susan's sister.

The Great!

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

because my sister was diagnosed with this disease and thru her I have become an advocate on her behalf where I live.

Ways to make it better...

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

Make more announcements - let the public be aware of this disease... I live in Syracuse and everyone I have talked to about this has never heard of it...

June 17, 2010

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June 17, 2010

The foundation has been a great place to source information about both the disease and how to carry on with it.

The Great!

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

My life

More feedback...

How frequently have you been involved with the organization?

One time

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!

More feedback...

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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