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June 17, 2010

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June 17, 2010

The LAM Foundation is an amazing grass roots organization that does an outstanding job of carrying out its mission to support LAM patients and provide funding for researchers to help find a cure for this disease. We are blessed to have such a strong organization for such a rare disease. The foundation continuously provides support for the LAM patients. The pace of science for LAM has been remarkable. This would not have been possible without the efforts of The LAM Foundation. The LAM Foundation truly is a model organization.

The Great!

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

I have been part of many fundraisers for The LAM Foundation. They have been extremely gracious and supportive of the fundraisers. They go above and beyond with anything they do.

Ways to make it better...

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

Raise more money for the organization :)

More feedback...

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

the support they have offered.

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

DEDICATED!!!!!!!

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

CURE LAM!

Ways to make it better...

I don't think it could have been better- they are the BEST!

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

we need to raise more money to fund more research!

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

this is truly an amazing organization. I am so proud to be a part of it :)

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 16, 2010

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June 16, 2010

The LAM foundation is a wonderful non-profit organization. Most importantly, it provides emotional support and A BREATH OF HOPE for those of us with this disease. It also funds LAM research, and provides education to medical professionals and patients about this rare disease. HOPE is the kind and calming words of Sally Lamb on the telephone. HOPE is being able to connect with other patients. HOPE is knowing that this organization provided leadership and funding that led to the first clinical trial of treatment for LAM. HOPE is LAMposium, an annual symposium for both patients and researchers. It provides a forum for researchers to share their progress and make new plans. It provides patient education, and a place for patients with a rare disease to meet someone else with that disease. Patients meet researchers, researchers meet patients. It is encouraging for young researchers to meet a patient that says, "I will pray for your success". It is encouraging for patients to see the time and energy that researchers put into their work. HOPE is education for medical professionals, because sadly, many physicians have never even heard of this disease, so it often is not diagnosed or is misdiagnosed. A breath of HOPE - the LAM foundation.

The Great!

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

the information that they provided about my disease and how to live with it, in connecting to other patients with this rare disease, in in attending LAMposium. They gave me HOPE.

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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 14, 2010

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June 14, 2010

The LAM Foundation was established to spur interest and raise funds for medical reasearch to fund a cure for Lymphangioleiomyomatosis. I am so thankful that they began this process 15 years ago! I was diagnosed a year ago and they have been a credible, reliable source of information to me. They are doing a wonderful job of educating the medical community and raising awareness of this rare lung disease.

The Great!

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

I've received information critical to my health condition through the foundation. I've been given information on how to contact other women with this rare disease so we can share coping mechanisms and heartfelt stories.

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

...so friendly and hard working! They always have a smile on their faces even when they're working so hard for all of us.

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

...find a cure to this rare, progressive disease that kills mothers, sisters, aunts, and daughters in the prime of their lives.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 12, 2010

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June 12, 2010

A trip to the ER back in June 2008 is what led to my learning about the LAM foundation. I went to the ER thinking I had gall stones only to discover I had a collapsed lung. My family and I wanted to know why - I wasn't in an accident -I had never had any issues with my lungs before. If it wasn't for the LAM foundation and their efforts to ensure doctors and pulmonologists know about this disease I may have been sent home without any real diagnosis or treatment. The pulmonologist had no other patients with LAM but knew that the recommended treatment was a pleurodesis to prevent future lung collapse. The LAM foundation made it so I did not have to suffer thru multiple lung collapses and trips to the ER and they provided me with information about the disease. Six years prior to being diagnosed with LAM I had emergency surgery to remove my kidney due to AMLs which I know now have a correlation with LAM. Again, the LAM foundation was instrumental with providing the information, support and medical contacts I needed and I feel truly lucky that the LAM foundation exists. What they have done in such a small amount of time is truly awe inspiring. The women they have helped and the research they are responsible for -it is priceless.

The Great!

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

ensuring the disease does not go misdiagnosed. I was one of the lucky ones - and that is because of the LAM Foundation.

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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 12, 2010

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June 12, 2010

I was diagnosed with lymphangioleiomyomatosis in September, 2007, shocked, confused and scared. My doctor told me to contact The LAM Foundation as soon as I could. When I called, they were so kind, understanding and KNOWLEDGEABLE! They sent me a LAM Handbook and a book entitled "Personal Journeys", a collection of stories written by LAM patients about their LAM experience. I learned so much about my disease and how to manage the different aspects of it. I also learned of a clinical drug trial that was underway called the MILES trial. Thanks to the financial support of The LAM Foundation, I was able to enter the study as soon as I could and stick it out for 2 years. I am SO thankful that The LAM Foundation exists to fund research, provide education and raise awareness about LAM. They provide us with pamphlets and booklets about LAM that I regularly bring to doctor's appointments or the hospital to help educate the medical community. By sending me posters, pamphlets, LAM bracelets, key chains, a DVD and the ability to open up a bank account, I was able to put on a successful fundraising event to raise much needed money for The LAM Foundation mission of research and education. Finally, one of the most important gifts that The LAM Foundation gives us is HOPE: hope for a treatment, hope for a cure, and hope that no LAM patient will ever feel alone.

The Great!

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

As a new LAM patient, during clinical trial participation and when I put on my fundraiser.

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

The financial, educational and emotional support The Lam Foundation provides.

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

Kind, understanding and knowledgable.

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

Support even more research into a treatment and cure for LAM.

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

June 12, 2010

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June 12, 2010

I was diagnosed 16 years ago - before the LAM Foundation, before there was any kind of support anywhere. I was told I would live maybe 4 but certainly no more than 8 years. I certainly felt very alone and had no where to turn for support in this journey. The LAM Foundation has become a lifeline for women diagnosed with LAM and their friends and family. No longer does one need to feel so alone and hopeless. The LAM Foundation has been invaluable for so many through the wealth of easily understandable information, the listserve to connect women no matter where in the world we live, the visibility at conferences, the commitment to teach the medical community to recognize symptoms of LAM, the inspiration and funding to support research... I went from feeling i had a death sentence to feeling every reason to be hope-filled in living a long and meaningful life, doing what I love most. I am unspeakably grateful.

The Great!

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

See above

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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 11, 2010

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June 11, 2010

I was just diagnosed with LAM in Feb 2010. I went online to do some research and found this website. I sent an email asking for more information and they sent me a big book that was very very helpful. I have been able to get many questions answered from them and they have been the greatest help to me. They helped me to find a doctor here in my town that knew about this disease. My doctor had never heard about it. Since Feb I have had some great information and some great response to my questions. Thanks to the LAM foundation for all their help and support they give to me and all the others they help.

The Great!

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

by getting all my questions answered and getting information that no one else seems to have on this rare disease

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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 11, 2010

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June 11, 2010

I was diagnosed with LAM in 1990. Sue Byrnes called me in 1995 and I felt such relief that there are others out there with this disease. She and Dr. McCormack and everyone involved with the LAM foundation is kind and helpful. My doctors rely on the research coming out of the LAM foundation.

The Great!

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

Being able to participate in the NIH protocol. Finding out about a drug to minimize chylous fluid in my system.

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

The personal touch they give each of us. I feel that the people on staff care about each person individually.

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

Very kind and also professional.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 11, 2010

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June 11, 2010

After being told there was no treatment and no cure for LAM, I was devastated. There was so little, and such outdated information on the internet. When Sue Byrnes called me one evening it was such a relief to learn there really was help for me at the LAM Foundation! Where there still was no treatment and no cure, there was patient support and science working for the answers! Now almost 10 years later, I have participated in the LAM Foundations efforts and events and know that I am not alone in this struggle, that eventually an answer will be found! The staff is first class excellent~ I have called with many issues and problems over the years and they are always there with me until the matter is resolved. I thank God for this organization!

The Great!

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

Donating tissue for scientific research, contacting specific doctors and surgeons in emergency situations, researching for help at National Institutes of Health, Patient support for a untreatable and rare disease etc, etc, etc. for the past 10 years.

Ways to make it better...

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

'Work there' to help them. Some times all I have to give are my two hands. My 'time' on this earth is increased by their daily efforts.

More feedback...

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

The cheerful attitude they have as they try to help save lives.

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

Beyond helpful

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

Invest it in a treatment and eventual cure for a very cruel lung disease called Lymphangioleiomyomatosis or LAM for short.

Ways to make it better...

If there could be more staff. I see the same small group of people covering such wide areas. All non-profits are really stretching every dollar these days. This small staff shows such love and compassion in their work!

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

Consistent funding. It's easier to raise funds for something a lot of people have (like cancer). LAM is so rare....even very few doctors have heard of it. It doesn't seem that important- till it happens to YOU!

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

When there is no treatment, no cure...... HOPE is all that a person has. For women all over the world, this support comes from the LAM Foundation. They are our 'BREATH OF HOPE'

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 10, 2010

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June 10, 2010

I was diagnosed with LAM in 1980, and fought a lonely battle with all kinds of complications from the disease. It was only three years ago that I learned of the LAM Foundation and signed up for the Listserv of patients. It was a revelation to learn about so many other women and their experiences with LAM. And the Foundation is always there to answer questions and give support. The annual LAMposium conference is a phenomenal experience, allowing patients access to researchers and doctors working on LAM, at the same time as providing a loving and learning experience for patients. I love this organization for its' ability to respond quickly to patient needs.

The Great!

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

Helping me be more informed about LAM and the efforts being made through research. And in being directly accessible to wonderful staff people for help and direction.

Ways to make it better...

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

Let more people know about the incredible dedication of the LAM Foundation to we, the patients. It seems to me that they are creative and do everything right!

More feedback...

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

Connection to other patients and sharing experiences on Listserv, as well as the wonderful, very available staff

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

From executive staff to volunteers, everyone is exceptionally kind, involved and professional.

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

Help find a treatment for this rare disease that destroys so many woman's lives

Ways to make it better...

All of my experiences have been exceptional

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

Gaining awareness in the medical community of this rare disease so that women can be readily diagnosed; also, finding a "champion" to lead our campaign to raise funds and educate and serve. By that I mean a well known figure.

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

Thank you from the bottom of my heart for all the LAM Foundation has done for me and others

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

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