Donate to the BUSM Amyloid Research Fund

As I mentioned when I began this journey in June, amyloidosis is a rare, deadly disease, striking approximately eight per million people. Its lethalness is attributed to the nature which the disease attacks the major organs, and (perhaps more importantly) the high rate at which it is falsely diagnosed by doctors who are not aware of the disease. By time a patient is transferred to a skilled specialist who can make an accurate diagnosis, the disease has progressed to a level which is difficult to treat.

The amyloidosis community has struggled to increase public awareness of the disease, however due to its rarity and perceived low impact on society, this has been difficult to accomplish. As a result, funding for research and treatment centers has been difficult to generate. This is tragic, as there is still no cure for this disease.

But there is hope. A number of treatments have been put together to stop the progression of this disease. Most of these treatments have been bourne out of research breakthroughs from sister diseases such as myeloma and leukemia. There are a dozen or so clinical trials underway today which use different methods to eliminate the amyloid, each with different levels of effectiveness.

I am thankful for these researchers and the vast progress they have made in the last few years. It is humbling to know most of the drugs and protocols used on me in my treatment are less than fifteen years old.

If you are interested in helping join the fight against this disease to find a cure, I would encourage you to make a donation to the BUSM Amyloid Research Fund. Print out the donation form, fill out and send to the address listed.

On behalf of all amyloidosis patients I thank you for your support.