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LAM Foundation
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 There was so little, and such outdated information on the internet.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.

More feedback

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

MY ROLE:
Client Served & I was searching for help with a rare disease diagnosis.