My Nonprofit Reviews

I am a scientist with a Ph.D. in pharmacology. I met the founder at an American Heart Association event -- after I had a quintuple bypass. Two of my 3 children also have elevated Lp(a) levels. Thus, I am both a scientist that is interested in Lp(a) biology and an individual with a strong personal motivation to facilitate advances in treatment of Lp(a).

The Lipoprotein A Foundation is a group with an exceptional founder, Sandra Revill Tremulis, and an equally impressive scientific advisory board composed of scientific experts in lipoprotein(a) biology. Sandra has been amazingly focused and provides strong leadership. I consider her an outstanding role model and the Foundation a wonderful resource for both the patient community and for the physicians that treat the affected individuals.

Approximately 1/5 of the population has increased risk of atherosclerosis due to elevated Lp(a) levels, but most do not know it. This group provides robust educational and emotional support for individuals who have recently found that they have high Lp(a) levels, whether this occurs before or following a cardiac event. Through the advocacy efforts of the Foundation, an ICD-10 code has been developed to facilitate testing and treating elevated Lp(a) levels. The Foundation has raised awareness of the gravity of this condition and built interest in the pharma community to address the condition. We have progressed in the last couple of years from having only plasmapheresis as an effective means of lowering Lp(a) levels to having several new drugs in the development pipeline, at least one of which has been shown to lower Lp(a) levels by up to 90% with biweekly or monthly injections. These drugs are entering phase II and III clinical trials, and the most recent trial (Novartis phase III) will seek to test the efficacy of its drug in >40,000 subjects worldwide. This development can be directly linked to the efforts of the Lipoprotein(a) Foundation.

Beyond advocacy and education, the Foundation provides a forum for interested individuals to share experiences, frustrations and triumphs. Critically, there are often discussions that wander toward pseudo-science. The forum is effective at reminding the participants of the evidence based medicine that guides its mission, and gently discourages propagation of non-evidence based treatments and theories.