Li Fraumeni research charities or foundations?

[Wot53]

Hi.

I was wondering what foundations or charities were out there that were focused on research into Li Fraumeni or potential treatments for mutated TP53?

It would be great to build a list based on what people know.

Regards
Wotsy

[PanP]

I think this is a really good idea. Do you have some listed already that we can use to start off with?

Pan

[Wot53]

Sadly I don’t know any, which is why I posted the question. I know there has been TP53 research in many places around the world (perhaps the most studied gene in history) but I could not find anywhere donations could be directed to further this research or specific for Li Fraumeni.

So if anyone has any it would be great to hear.

Wotsy

[SKH]

I would have thought the lfsassociation.org would be the best bet?

SKH

[Wot53]

I have looked at the lfs assoc but it is not clear how the funds are used. I also have found a long time passes before posts are accepted or responded to on their forum, unlike here where you usually get responses.

Do you know of anywhere doing research? Perhaps they might have a grants program or similar I could look into?

Wotsy

[PanP]

Well, we intend to be a research charity among other things! For now there seem to be very few groups looking at LFS particularly, rather than at TP53 in general. There’s Farazana Walcott at the NIH running a trial of metfomin in LFS, but other than that the focus in much LFS research is on surveillance protocols (for example the SIGNIFY trial in the UK).

Pan

[Wot53]

If there is not much happening, perhaps a question might be ‘what research should be done’? And then perhaps a research trust can be set up for donations directed at specifically establishing this research and seek donations with a clear use of the funds in mind.

I guess though the big question is what research would be best?

[PanP]

I know what I think the most important thing is – research into active cancer-prevention in LFS. This is a big step on from looking only at active surveillance to catch cancer early. This is something that the Trust wants to major on – and which we are gearing up for at the moment…

Pan

[Wot53]

I do wonder if the drugs being developed for cancer treatment where P53 is mutated have potential to be a low dose preventative regime for Li Fraumeni TP53 cases. Perhaps depends on the nature of the genetic mutation as to which drug would work. Eg COTI-2, P28 peptide.

Also I have seen some research around understanding the mechanism of action for Metformin, but it seems to suggest it is a mTOR inhibitor. If so you would think it only helpful if that pathway is implicated in the tumour genesis. But of course it can be other pathways. Perhaps the future preventative regime will be a bit of a cocktail of blockers and/or activating agents.

I would be interested to understand your thoughts and what you might be thinking in regards to the brief for the research you are exploring.

Wotsy

[PanP]

It’s a sijmple idea really. Science is uncovering more and more functions of TP53 over and above the apoptopic machinery. I want to figure out how these apply to LFS and cancer, and then with that see what interventions are required to reduce the risk of carcinogenesis.

Pan

[SKH]

Pan have you talked to the LFS.org about your ideas?
SKH

[PanP]

You mean http://www.lfsassociation.org/? I haven’t had contact with anybody associated with them for a while – which is silly really. I’ll drop them a line – their website has come on a long way since I last looked at it.

Have you, or any other forum member, had much contact with them?

Pan

[SKH]

I’ve tried but the forum doesn’t put your posts up for months which is hopeless. However I wonder if they would support your endeavours in the uk
SKH

[PanP]

I’ll try and see how far I get…

Pan

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