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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

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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

More feedback...

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

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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.

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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

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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.

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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

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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.

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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

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

more

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

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