Keeping HG survivors involved

[Feathery]

Just a note to the administrators that I hope we can find a way to keep HG survivors involved with the HER Foundation long-term. The members who are currently and past HGing will be the best sources of information long-term on how this disease has played out in their lives. Is there a voluntary "register" that hgers can offer their names and hg history to? (A "survivor registry?) I believe this would be helpful to any scientists that choose to study this disease and its long-term impact.

[PamelaRose]

That is a good suggestion, Heather. It would be hard to keep contact info up to date, but having some semblence of an HG register would perhaps help future research. Good thinking. Have you checked into volunteering with the HER Foundation?

[Feathery]

Hi Pamela:

No, I haven't checked into volunteering. But I would be willing to help out in some way. Maybe regarding the register itself? Who do you suggest I contact?

Heather

[RebeccaM]

Also, have you signed up for the HG genetic research in the Research Opportunites folder? They still need quite a few participants.

[PamelaRose]

You can contact one of our founders, Kimber or Ann Marie, or leave it with me and know that *eventually* I'll get to it!