Wednesday, May 7, 2008

The Lipoprotein(a) Foundation: An Update

Here is a synopsis of what is going on to establish the Lipoprotein(a) Foundation (LF).

1. I met with Mary Lou Ballweg, the head of the Endometriosis Association, an extremely successful group with many similarities to our proposed foundation. She informed me that the Milwaukee, WI area is a hotbed of start-up medical fiundations so I hope to take advantage of my location. Mary Lou provided a wealth of information and, I think, a powerful idea for jump starting LF. She recounted the key event in the growth of EA was the establishment of a database of self-reported information about endometriosis sufferers. The method they used was a simple brochure she mailed with instructions to fill it out and return it with a dollar to cover data-entry costs (this was the 1980's, no Internet). Universities like Dartmouth and Vanderbuilt were eager to get this type of research data as it was not available anywhere else and, voila, the research began in earnest. We should do the same and it will be a whole lot easier with the Internet (see next item).

2. Dr. Davis has formally agreed to donate all the necessary Track Your Plaque web resources to implementing the LF website. I now have admin privileges on the new development site and will begin to implement a web-based data collection tool within the TYP framework. Doc Davis also offered to donate the 501(c)(3) non-profit filing fee. When he mentioned the effort on his blog, several commenters offered their assistance as well (as they did on this blog). I would request that anyone still interested in donating skills or making contributions to contact me directly at hearthawk(at) with their contact information. I have helped start two other non-profits but I am not an expert and could use all the help I can get. (see next item).

3. In addition to the web work I have also started the IRS filing process. I guess the only thing I can say is I'll work as fast as time will allow. Obviously, anyone with knowledge of this process would be extremely helpful. We do have to form a board of directors at some point. Major contributors of time, talent, and financial resources are always prime candidates for these roles.

4. If we can attract an "angel" investor we can obviously move a lot faster! I have broached the subject of investment capital with a professional fundraiser that would consider helping us at a reduced fee as time permits but she is booked for at least six month to a year. Whether it's a million people with one dollar or one person with a million dollars we will need to start raising money to fund research. Frankly, at the risk of appearing mercenary (I am), our best bets are people plagued (or "plaqued") with Lp(a)! The beauty of medicals breakthroughs is that once a cure is found for/by one person's efforts, it cures almost everybody.

5. If anyone has any medical/research/academic contacts they would be useful to help form our advisory board. The University of Wisconsin is a top medical research facility and I have scheduled a meeting with a blood researcher there. As luck would have it, my daughter is a biochem major at UW working on here senior research thesis and is searching for addtional contacts (I oughta get something back for all those tuition payments!).

That's where we are. Let's slay the Lp(a) dragon!




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