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August 22, 2012

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August 22, 2012

Three months ago I was confused and scared, knowing there was something wrong with my lungs, but not having any idea what. One doctor suggested it might be LAM, but it is a rare disease, and she didn't know. I looked up LAM on the internet and found all kinds of scary information, but I also found the LAM Foundation. I contacted them asking about their listserv that I saw mentioned, and the Patient Services Director responded to me within hours. Since then she has helped me find information, doctors, and other women with LAM to connect with. And all that before it was clear if I had the disease. Turns out I do have it. Found out a couple weeks ago. Some women spend years trying to get a diagnosis when they have LAM. I think my path to diagnosis was made shorter and easier (though not easy) by all the help I got from the LAM Foundation and from the ladies on their listserv. Now I get their newsletter and other information, and it is all tremendously helpful.

Ways to make it better...

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

...figure out how to help them raise money better.

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

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 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

As a LAM patient, The LAM Foundation has provided me with a well balanced and well researched forum to get the answers I need about this very mysterious disease.

It is run by compassionate and hard working people who understand the seriousness of LAM and have dedicated themselves to
finding the cure, if not theraputics, to prolong lives and imrove quality of life for us small group of women .

The team of Doctors and Scientists associated the TLF have delivered 3 major discoveries in a short period of time:

1) The genetic mutation responsible for LAM - which in turn opened the door to theraputics such as:
2) Sirolimus - The first approved drug that seems to stall progression
3) A non-evasive blood test to confirm LAM called VEGF-D

I will forever be grateful to all the love and commitment that comes from the Foundation. They are the best resource for LAM info.

The Great!

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

Finding support and current, accurate information about LAM.

Ways to make it better...

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

Look for a celebrity spokesperson.

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

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 29, 2010

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June 29, 2010

It is truly remarkable how the human body can continue to keep on going with significantly reduced organ function. With lungs forever damaged from a rare, progressive disease, it is a matter of time when lifestyle must change to accommodate the daily struggle to breathe. Having knowledge that an organization exists that will help with the numerous transitions once being diagnosed with LAM, is a tremendous tool for both health care provider and lay individual alike. With no definitive treatment or known cause, treating a woman with LAM can be quite a challenge for even the most seasoned practitioner. The LAM Foundation offers the most current and updated findings to help steer the patient and physician in the proper direction. A priceless resource that might have never been without the dedication and willpower of it's founders and staff. Dealing with the symptoms of LAM is akin to being in a small boat on a stormy sea; the LAM Foundation provides a beacon and safe harbor for those affected. Great strides have been made in recent years with regards to diagnosis and treatment of LAM. This progress would not be happening without the foundation.

The Great!

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

...my current participation in drug trials and data collection to help find answers and options.

More feedback...

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

networking and meeting people from all over the world.

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

Exceptional in every way!

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

Allow those researchers who are waiting in the wings to move forth and give their ideas a go. The pace of educating others on how to diagnose and treat would improve worldwide.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 28, 2010

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June 28, 2010

The LAM Foundation has guided many of us and our families through extremely difficult times. I don't know how I would have coped with this disease had the Foundation not been established. The staff are fantastic and the doctors who research the disease have given me and other women with LAM so much hope. Just saying "Thanks" to all in the Foundation will never repay my debt to them.

The Great!

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

learning where to seek help, how to help myself, and how to give back. I wish I had more money to donate.

Ways to make it better...

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

increase the funding and hire additional staff because the Foundation has grown so much in the past 15 years.

More feedback...

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

meeting other women with LAM.

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

the very, very best!!!

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

cure LAM.

Ways to make it better...

I could stay longer at functions.

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

lack of funding for research and drug trials.

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

I can never repay the Foundation for the hope it has given me.

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

June 25, 2010

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June 25, 2010

The LAM Foundation is different from any thing I have ever been involved with. Being a LAM patient was not something I would have ever chosen for myself. Having LAM has been difficult to say the least. I found out about the Foundation after 2 lung collapses and surgery to repair my lung. The doctors told me I had the disease, but, they didn't know anything about it, and they would have to "check into it". I went home and found the Foundation on the internet. Within 1 hour I was speaking with the woman who founded the organization, Sue Byrnes. She spoke to me with such caring and compassion. She relieved many of my fears. I had been given some misinformation. Within 2 weeks I was seeing doctors that worked closely with the Foundation. This was in 2001. Ever since then these amazing people have helped me time after time with no regard to their personal commitments. When I have needed their help, they step up time after time. From phone calls when I am hospitalized, to actual rides to the hospital and staying at my side until my family could arrive. To me, these acts of kindness are above and beyond the call of duty. That is why I believe the LAM Foundation has been, and continues to be the most amazing group of people I have ever been privileged to call my friends. I know 24/7 they are working to find a treatment, and, or a cure. I also believe that the day will come when they succeed. Thank You, Barb Turner

The Great!

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

they have always been there for me in every way. They keep me informed about any new finds about my disease so that I can keep my local doctors updated.

Ways to make it better...

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

Try to get more funding so they could all take a paid day off!

More feedback...

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

Their kindness!

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

selfless. They never seem to be able to do enough to make life better for us patients.

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

Fund more research, raise awareness about our disease, help more LAM patients attend our yearly conference.

Ways to make it better...

I could have attended more functions.

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

In today's economy I would have to say fund raising is even more difficult.

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

I respect each and every person that works so hard for our cause.

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

June 17, 2010

more

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

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