I just received some disheartening news from Dr. Sally McCormick one of the world's few Lipoprotein(a) researchers. I had asked her how her lead anti-Lp(a) compound was fairing in trials and the answer was not good, "some of the animals were quite sick after dosing with the peptide, we think due to the peptide being unstable and aggregating in the circulation."
Sally did make one other statement at the end of her letter that stuck with me, "Sorry I can't be of more help to you and other high Lp(a) sufferers as yet, we are trying to develop something but its just really slow when time and funding is limited." This reminded me of a woman I know (right here in my hometown) with another neglected medical condition called endometriosis . Like Lp(a), few people were doing any research and fewer companies were investing any money in finding a cure. She started the Endometriosis Association to provide support and create pressure to find remedies for persons with her condition and was immensely successful.
Perhaps all of us Lp(a) sufferers should do the same. I have started a 501(c)(3) educational charity in the past - it's not fast or easy thanks to the U.S. government. It takes lawyers (or really knowledgeable people) at least a little money (the filing fee alone is around $500) , and a lot of work to grow the organization. My vision would also include raising a boat load of money to fund independent medical research similar to what is being done by some of the pioneers like Dr. McCormick (I'll bet there are as many wealthy people as poor people slowly dying of Lp(a)).
So there you have it, the Lipoprotein(a) Foundation! I know Track Your Plaque will front us the web presence and let us use their new community/networking software they are developing. Dr. Davis as well as several other professionals associated with Track Your Plaque have expressed interest but they are too busy to start it or run it. Now, can the rest of us develop the critical mass to put something like this together and cure ourselves?!