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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.

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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

June 10, 2010

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June 10, 2010

Sue Byrnes was the first person I talked with after receiving my diagnosis of Lymphangioleiomyomatosis (LAM). She calmed my fears, sent me information about the disease and about the Foundation and told me about the LAM patient Listserve. This is how my education about a disease I had never heard of began and continues to this day.

The Great!

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

This organization had provided funding for research and treatment trials. The information gained from the funded research and treatment trials has given hope that a treatment and possibly cure will be found for LAM.

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

The friendly, helpful staff

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

knowledgable about LAM, friendly and truly concerned about the welfare of those diagnosed with LAM

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

find a 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 9, 2010

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June 9, 2010

I was formally diagnosed with LAM, November 2009. I had Sue and the rest of the foundation walking by me side by side through the entire process. They helped me find a doctor who was familiar with LAM and get great care. They also are available at any time to answer my questions. They have made me feel less lonely, having such a rare disease. They make us feel like a great community. We have a site where we can talk to other women in all different phases of the disease, and from all over the world. To have a rare a disease, the LAM foundation is the best.

The Great!

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

The material they send me, allows me to help my doctors treat me better. They help us stay up to date with new information and studies. Because of them, I will be able to go to NIH this summer to participate in a study of AML's and LAM.I

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

the connections I have made through them with the other woman with LAM.

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

so caring. They took time to answer all my questions, guide me to he best resources, and simply provide me a listening ear when I needed to talk.

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

bring more researchers together to work on a treatment and hopefully some day a cure!! It would save woman's lives all over the world.

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

I was diagnosed with LAM in July 2006. This diagnosis changed my life. I was fortunate to have a pulmonary doctor that was familiar with the LAM Foundation. He gave me information to get in touch with them, which I did shortly after seeing the doctor. The LAM Foundation has been a great help to me, both emotionally and financially. I can't say enough good about this organization. Debbie

The Great!

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

finding out what this disease is truly all about. I was directed to a medical trial because of the LAM Foundation.

More feedback...

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

meeting so many wonderful people.

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

absolutely marvelous.

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

probably find a cure for LAM.

How frequently have you been involved with the organization?

About once a year

When was your last experience with this nonprofit?

2010

June 9, 2010

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June 9, 2010

I was diagnosed with LAM following a 10 day hospital stay. Other than being short of breath, I had no reason to suspect I had anything wrong with me. The diagnosis of LAM shattered my world. Overnight, I was thrust into a world of full time oxygen use, a rare illness no one had heard of, and my doctors (former, now) were of little help. I googled LAM and came across the LAM Foundation. What a diffenence a search can make! Within a week, I was sent a packet in the mail, telling me many critical things that were known about LAM. More importantly, the Foundation sponsers a list serv grou- where women with LAM can communicate- for help, support, and information. This changed my outlook dramatically, as I was able to learn, and cope, and adjust.

The Great!

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

I was part of the MILES trial that the Foundation funded. It was because of them I developed a relationship with the Cleveland Clinic, where I hope to get listed for a double lung transplant- the only treatment open to LAM women.

More feedback...

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

The information avialable- up to date! The caring way each and every one of us are treated. The fact I was allowed to participate and make a difference!

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

They are warm- and approachable, and care about every single LAM patient they come in contact with.

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

FIND A CONCRETE TREATMENT FOR LAM.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 9, 2010

more

June 9, 2010

The LAM Foundation is a God send for the women who have the rare disease Lymphangioleiomyatotis. They have financed Millions of $$ for reseach that was badly needed for this rare disease. In a short 15yrs much has been learned but still no treatments or cure. I have been able to go to the National Institute Of Health for testing and answers for my many questions only because the LAM foundation got it started. I have also been in a durg trial at the NIH. I have been to there convention in Cincinnate a couple of times but the most inportant and daily help is a chat room called the listserv for women with LAM. It has helped many of us get through many hard times. Susan Russo

The Great!

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

As stated above this foundaion stared to raise money for the rare disease LAM. It spreads awareness and raises funds for much needed reasearch. This rare disease effects only women and there would not be any help. This LAM foundation has even helped drs.

More feedback...

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

There is no other help for me.

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

Kind and eager to help and have been like friends to me.

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

Find a cure or treatment for the rare disease LAM

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

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