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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.

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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.

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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.

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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

June 9, 2010

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June 9, 2010

I am 55 years old, live in Nova Scotia Canada and I am categorized as having Mild LAM and I am stable at the moment. I was diagnosed in 2004 after my lung collapsed twice. After a biopsy & surgery to attach my lung to my chest wall I was dumbfounded with the diaganosis of LAM. Fear, anger and disbelieve were just a few of the emotions I felt. My respirologist told me about a Natural History Study at the NIH & I signed up. I was contacted by the LAM Foundation & was sent some literature about LAM, found out there was an email community for LAM patients that is wonderfully comforting & informative. Thank you LAM Foundation & NIH for being there for us "Lammies".

The Great!

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

Just gives me peace of mind to know I can talk to someone who knows what I'm going through.

Ways to make it better...

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

I wouldn't make any changes.

More feedback...

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

The fact that they know what I'm going through.

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

Caring & knowledgeable.

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

Reach more women and educate more Doctors

Ways to make it better...

Couldn't say.

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

Short funds.

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

Thank you!

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 9, 2010

more

June 9, 2010

When I was diagnosed with LAM in 2005 I was sent home from the hospital knowing nothing except that I had this incurrable lung disease. Those first couple of years were very lonely and very scary for me. Then I was connected with the LAM foundation. With an entire community of people working towards finding a cure and they connected with with other LAM patients. The LAM foundation has given me comfort, more hope and a new family that understands what I'm going through.

The Great!

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

many different aspects of my life. I know now that there are people working hard towards finding a cure, I'm connected with people i would have had no way to connect with otherwise, I have more hope than ever before

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

the employees and volunteers and the people that they've connected me with

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

very professional but at the same time very personable, friendly and just wonderful people

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

probably find a cure for this horrible disease. They could help so many more women with LAM in so many ways

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

My Name is Flávia Patitucci Sobroza. I am 45 years old and have a 15 years old daughter named Úrsula. I was diagnosed with LAM in 1994 during my pregnancy but I am sure that LAM starts it's symptoms at least 5 years prior my pregnancy. In 1994 not much was known about LAM in Brazil. In 2002 I found The LAM Foundation and my life changed. I received lots of information about the disease, the Foundation's work, and also NIH LAM Protocol. I have attended LAMposium since 2003 Due to The LAM Foundation I learned enough about LAM to share all this information with other Brazilians LAM Patients who have never heard anything about LAM and mostly don't speak English.

Photos

The Great!

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

my life when I didn't know nothing at all about LAM and Sue Byrns provide me all informations I needed.

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How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2010

June 9, 2010

more

June 9, 2010

On an otherwise ordinary day in early 2004 I visited an ER in Denver for shortness of breath. After 8 hours waiting for a radiologist to arrive who recognized the rather dramatic appearance of my CT scan I received the startling news that I had Lymphangioleiomyomatosis or LAM. More upsetting was discovering that LAM has no known cause, no effective treatment, is eventually fatal and that the patient population is so small I would probably seldom run into doctors who had heard of LAM - let alone meet other women with the disease. A call to the LAM Foundation in Cincinnati changed all that! The Foundation has helped me find medical care, educated me about LAM, and given me support at every turn. Most significantly, I have been given the opportunity to network worldwide with an amazingly courageous group of women with LAM that has kept me from feeling alone as I have learned to deal with the disease. I am extraordinarily grateful to all concerned with the LAM Foundation which deserves unending recognition and accolades.

Photos

The Great!

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

improved medical care, education, and emotional support.

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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 9, 2010

more

June 9, 2010

I was diagnosed with LAM in 2003, and at the time, I had seldom been sick and never in the hospital except to have a baby! Overnight, my life changed, and The LAM Foundation was there to provide information, guidance, connection with other women who have LAM, leadership, research, fund raising, and, in a word, HOPE! They all work incredibly hard for LAM patients, to help fund research, to fund and encourage the formation of LAM clinics all over the world, educational outreach through pamphlets and networks of doctors and health professionals, and even drug trials - amazing for a disease that affects such a small number of women. Their annual conference, LAMposium, brings together LAM patients, researchers, doctors and health professionals for a time of absolute fun and also education, information and fund raising. I can't say enough good about the LAM Foundation!

The Great!

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

Being able to participate in the MILES Trial at Cleveland Clinic, attending LAMposium, and being a part of the Listserv that the Foundation provides for women with LAM.

More feedback...

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

Finding such a source of hope and information.

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

Energetic, dedicated, and top-notch.

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

Fund more research projects and LAM clinics throughout the world.

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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