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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 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 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 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.

More feedback...

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.

More feedback...

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.

More feedback...

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

more

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.

More feedback...

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

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