Tuesday, April 15, 2008

The Lipoprotein(a) Foundation: Time to Start One?

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."

On the bright side she also mentioned she is about to publish some preliminary research on DMPC (dimyristoylphosphatidylcholine which is not to be confused with PPC or phosphatidylcholine being studied in the Track Your Plaque Virtual Clinical Trial). Additionally, Dr. McCormick does have one other lead compound in the pipeline but it is not in trials yet.

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?!

Regards,

HeartHawk

14 comments:

Oke said...

The medical community has stopped trying to treat my Lp(a) problem. My total cholesterol was last known to be 102. However, my inherited Lp(a) numbers when last known were "15 times normal" according to the doctors. I suffered a massive coronary in May 1999 and required triple bypass in Jan 2007. They have stopped checking my Lp(a) because "We are already doing everything we can, so what is the point."

We *NEED* an Lp(a) Foundation.

HeartHawk said...

Oke:

Your story epitomizes the situation with the traditional medical community. Lp(a) sufferers either get a blank stare or are told there is nothing they can do. Hell, they do not even give that lame excuse to cancer patients anymore. There is ALWAYS something you can do.

For example, I am now reviewing old data regarding the use of macrolide antibiotics against c. pneumoniae bacterium. It was once thought that bacteria promoted atherosclerosis and antibiotics could improve outcomes but subsequent trials disproved that theory. Now there is a a theory that c. pneumoniae and Lp(a) may act together. This is interesting to me because the only time a dropped my Lp(a) below 30 mg/dl was when I was on an extended course of - you guessed it - azithromycin, a macrolide antibiotic.

There are many other potential treatments out there. We just need a group dedicated to sorting them all out. Once that is estableished, the only real impediments are time and money. So, stick around and monitor this. At a minimum I am going to start a group on the new Track Your Plaque website (when its online).

Anyone else want to chime in on how we might make the Lipoprotein(a) Foundation a reality?

HH

Neelesh said...

Indeed. People who cannot tolerate large doses of Niacin suffer more. My Lp(a) hovers around 120mg/dL, and my mother's is around 90. And my doctors suggested that I need not look at it because there is hardly anything one can do about it. We need the foundation. Please let us all know what can we (the victims, if I can say so) do to help start and grow the foundation. I'm a software guy by profession, if any help is needed in that area.

Neelesh said...

Since we are all geographically separated, the best way to start would be on the Internet. This way, we can defer the legalities of forming a Foundation for some time.(For whatever reasons- money, time constraint, for example). Basically a dedicated community on Lp(a). People can post their experiences, probably share their medication and Lp(a) levels periodically. Over a period of time this could grow to be a wealth of data for hard core researchers.
On the contributions side, probably create a PayPal account for donations? we can start with an individual account. I trust you with my money :).
My two cents.

HeartHawk said...

Neelesh:

I believe that as many as 20% of all heart disease sufferers have high Lp(a) but unfortunately many do not even know they have a problem. That is still a lot of people. We need to get the word out. One by one we can build a list of people who, like you, have dfferent skills, time availability and, yes, the ability to raise money.

It has been less than a day since I wrote this blog post and we already have two replies. Today I made an appointment with the Executive Director of the Endometriosis Association to see what guidance they can provide in starting a foundation(they were tremendously successful in starting a group to address their malady). I'll blog more on this after the meeting scheduled for April 23rd. Let's do some "viral marketing" and keep the list of interested parties growing. I am also contacting other Lp(a) researchers like Dr. McCormick to get them on board (Drs. Scanu and Marcovina to name two). Who knows, this might be the start of something big!

HH

Lisa! said...

Wow. I'm so excited to find this community! Also, I have been working for non-profits for a while...fundraising for one and education for another, and very much want to be involved in this Foundation idea. I am 35 and suffer from LP(a), my mom suffers from it as well. It is pretty scary to see what is going on in her life (triple by-pass, high blood pressure, etc.) and think that I may be in her place in 25 years or so. I'm on Niaspan, and she was on Niaspan but it hasn't helped her - only landed her in the hospital with liver issues. And tell my why, please, no one lab seems to measure the LP(a) in the same way? How am I to know if I am making progress if everyone uses a different scale? Grrrr... Please let me know what I can do to further this foundation. I'll do anything to help!

Anonymous said...

I may as well chime in here. I also have high Lp(a), probably close to about twice what is considered healthy/normal.

My mom had several strokes when she was in her 70s. However, she also was a smoker for most of her life (until she had to have a heart valve replaced), led a sedentary lifestyle, ate poorly so while I probably got my high Lp(a) from her, who knows what actually killed her. She died at 76.

I'm the opposite of my mom. I'm 55, been a fitness professional for 17 years, I eat healthy and rarely get sick. My cholesterol hovers at around 200-220, but my HDL is very high, Trig very low, and my LDL is acceptable (but probably should be lower). I had a heart scan last year that show no measurable plaque. But so what?! I still don't know what might be lurking around in my body that can cause a sudden stroke.

I won't take Niacin because some of my Liver enzymes tend to run high. You'd think the drug companies would be hard at work trying to come up with something to treat this (not that I would probably trust what they come with...sadly). Anyway I look forward to reading more here and sharing information.

Bonnie

dr john said...

have you seen this .. any value?
http://genomebiology.com/2007/8/9/R200

I have high liver values, if any good can you comment in TYP
john aust

NV Hawaii said...

Hello,
I am a 37 year old asian male. My general doctor just informed by that my LP(a) is 102 mg/dl. My LDL is 157 and my HDL is 42. I just nodded my head because I had no idea what LP(a) was. He has referred me to a cardiologist who I will see next week. My general physician has prescribed me a statin (to reduce LDL) and aspirin because he does not think there is any way to reduce LP(a) due to its genetic base. I have since been researching about LP(a) and I am discouraged by the fact that it seems to be such a strong indicator of heart disease, yet there does not appear to be much in the way of LP(a) specific treatment recognized by the mainstream medical community. I have read about Naicin treatment and the Pauling Therapy (Vitamin C; L-Lysine; and Proline), and I feel like these treatments may be effective or logical, and I am wondering why my general doctor did not recommend these treatments. I guess I will ask the cardiologist. I am concerned that these treatments may not be fully researched or explored by empirical studies because the Big Pharma-statin companies do not have any financial incentives to study the effects of low cost vitamin therapies on people with high LP(a) -- Big Pharma is making too much money off statin treatments. I am starting to think this, in turn, has an echo chamber effect with mainstream doctors that niacin or Pauling therapy is not proven and therefore should not be tried. I'm definitely hoping that my cardiologist is on top of the latest in LP(a). I just wonder why more research into LP(a) treatment or reduction is not being done!

HeartHawk said...

Dear NV Hawaii:

Yes, your doctor is a dope and yes niacin can work well. He also should have known it will work well to raise your HDL in addition to lowering your LDL and reducing triglycerides. I am not a believer in Pauling however. I would like to believe but there is a dearth of independent research to corroborate his findings.

On the research front there is some but Lp(a) is still relatively unpublicized so it is not attracting a lot of money. That is why we are starting the Lipoprotein(a) foundation! Surprisingly, there is a fair amount of research into reducing niacin side effects (flushing) so more people can use it.

Finally, there is a fair amount of Lp(a) info on the Track Your Plaque website. Just type in Lipoprotein(a) on the search bar.

Keep in touch!

HH

Anonymous said...

What would be really great is a "Mother" website devoted specifically to LP(a) information and references. Information resources and links to other blogs and sites with LP(a) info could be hyperlinked. Kind've like the "Drudge Report" of LP(a) with links to everything on the internet about LP(a). Also, it could be a general place for all people with LP(a) to discuss latest advances, treatments, issues. Although this blog is good because it is google specific I believe the traffic is not as high as a website with an address of say "www.lpa.com". I believe there would be much more benefit in having this type of supersite-mother website to link all of the disparate blog, resources, and materials together. I am not saavy enough to do this, but I sure wish someone would. If there is an LP(a) Foundation -- the web presence should be one of the first things to do! Donations to the Foundation could be solicited online. Guest Doctors/Cardiologists could be invited to blog. The possibilities are limitless.

Anonymous said...

Yes -- I believe we should start one now!

HeartHawk said...

Dear Anon:

Yes, those are all great ideas for the foundation and will likely be incorporated. I will be posting another update soon. I think we just may be able to pull this off!

HeartHawk

Lipoprotein(a) Foundation said...

There is a Lipoprotein(a) Foundation non-profit. Check out our page on Facebook. A web site is under construction. Please share this with anyone interested in Lipoprotein(a).

 
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