Dear Fletch,

As I know Dyan's dad - I understand his response as the loss of his daughter is far too fresh at this point in time.

I, as the President and Founder of the LYMF Foundation am very glad that you clarified your point in that there are so many different causes.  This is what we fight when a disease is still "rare". 

I am glad that you used Gorham's Disease although I personally wish you would have used LYMF (the acronym for Lymphangiomatosis) as your example - but as Gorham's does have some relationship to LYMF - your initial post provides some much needed awareness of this terrible disease.

I struggle all of the time in the need to make people care.  Not just people such as yourself who may open up your wallets - but physicians and researchers and even the patients themselves...

Your point is very well understood on my part.  There are too many diseases and other causes...

It is not until a disease that has no "hope" hits someone who is a celebrity and well known that it finally gets the attention it needs. 

Regarding the number of patients out there with these two diseases - it is very difficult to say as so many are not reported and only a few physicians and researchers have chosen to write reports on the diseases. 

In the world of research and academia - there are a lot of doctors and researchers that will write up a case just to become published - and then they are on to the next one that comes along...  When there are so few cases known about and no organized efforts - it is hopeless.

So here I am - feeling quite lonely in my cause to not only raise awareness of both diseases but also to encourage and motivate the scientific community to take on the cause.

Money of course is very important - but without the human resources and commitments - little can be done.

I understand that the point of your blog/rant is politically/economically motivated and that the use of Gorham's is just an example that you decided to use.

I am so glad you did and hope that although it does take away some from your main point - that indeed you did our small community that needs some recognition a great service.

You were honest and represent many different peoples' views and I remain objective in my understanding of what you were doing. 

As a person also affected by LYMF - and a struggling founder of a foundation dedicated to building the required network and resources to better understand the diseases and give hope that a cure may eventually be possible - I truly understand your point as I sit here every day realizing that what you are saying is so true and is the biggest obstacle to all who struggle with a very rare disease where little is known about it.

I thank you very much for your mention of the disease and returning the comment to Dyan's dad.  There is much said by doctors treating these patients who have theories - but as you stated - there is very little literature to cite and so far no established research to validate any theory that is brought forward.

The website for the foundation is in clear need of improvement and expanding - it is clearly a work in progress (and hoping that we will continue to progress) ...  http://lymf.org for anyone who may have had their curiosity piqued by this little discussion several months after the initial discussion started.

Just to let all of you know - we lost 4 children since this summer who have been diagnosed with LYMF or LYMF/Gorham's combined.  The Gorham's seems to be due to rare lymphatic invasion of bones and I truly do not understand it very much myself.

The ages of the children by the way were 4 years old (Luca and Chelsea), 11 years (Dyan), and 4 months (Domminick)...

We are grateful to the Internet for helping us to build a better information source that will hopefully provide better statistical data in the near future - which will potentially better predict the number of patients out there who suffer from these diagnoses.

Thanks again for your choice of diseases to highlight and happy holidays to all who read this.

Sharon J. White
President/Founder
The LYMF Foundation