2 DO LIST - HER2UMOR STUDY - Please add line items

[SoCalGal]

I am going to start this list. It will need refinement. Please adjust as needed. Once we have a comprehensive to do list, it will be easier for people to take chunks of it and move this forward. Please add items so we can keep going. I realized I didn't include any "legal". Regards, Flori

<!--[if !supportLists]--><!--[endif]-->I. Her2umor study
<!--[if !supportLists]--> a. <!--[endif]-->select appropriate person/s or facility to study our tumor samples
<!--[if !supportLists]--> b. <!--[endif]-->contact several candidates
<!--[if !supportLists]--><!--[endif]--> c. decide upon best fit (vote)
<!--[if !supportLists]--><!--[endif]--> d. get criteria – where to send samples, how much is needed, how MANY samples to make it worth it, do we have enough samples/members to have more than one or two studies concurrently?<o></o>
<!--[if !supportLists]-->
<!--[endif]-->II. Write grants for her2umor study
<!--[if !supportLists]-->
<!--[endif]-->III. Create regional manager to oversee each region of our board members
<!--[if !supportLists]--> a.<!--[endif]--> Collect and coordinate necessary data from board
<!--[if !supportLists]--> b.<!--[endif]--> Follow up on mailing of same
<!--[if !supportLists]-->
<!--[endif]-->IV. PR
<!--[if !supportLists]--> a.<!--[endif]--> Create e-file with an easy, down loadable information sheet on our project.
<!--[if !supportLists]--> b.<!--[endif]--> Mass E-mailing to local oncology groups & treatment centers if necessary
<!--[if !supportLists]--> c.<!--[endif]--> PR packs for easy download so our members can leave collateral materials at their own doctor’s offices/treatment centers
<!--[if !supportLists]--><!--[endif]--> d. MEDIA coverage – as much as possible on our stories and efforts to direct a cure!







<o></o>

[Lani]

I am so happy you are thinking in this concrete way.It shows you are a no-nonsense get-down-to basics and no dilly-allying type of woman! You are ready to proceed full steam ahead! That is what I had hoped for when I
admitted my limited forte's and the long list of items required for this project where others could in all certainly do a better job.

I originally (perhaps naively thought) of a similar course of attack to your outliine and hoped to help with the very initial stages due to the wide scope of my reading of the literature as well as the fact that, somehow, I ask good questions and that has resulted in researchers talking to me seriously (I have had my questions complimented by
Judah Folkman ("Mr. Angiogenesis"), Dr. Slamon, and Art Levinson (head of Genentech), as well as others). I often have to take a deep breath and realize I may face complete rejection and perhaps be the subject of derision, but if the goal is important I do it anyway.

Since returning and rereading the article I posted from the Wall St. Journal regarding what an industrial operation tumor registries have become vs the mom and pop operation I had envisioned/imagined, I believe we need the imput of those with a lot more experience ie, those who have set up similar registries for other diseases (hence the info on the woman setting up the melanoma registry), whomever at Baylor Dr. Schiff will be asking (she asked me to be sure her2 support people were serious and follow through and she herself will be exploring her institutions' requirements for participation/accepting specimens)

Just like it is not so easy to donate an art collection as you might think (I know of someone who was asked to donate $1 million in addition to their collection for a curator and costs of "accepting" the works!!!), nor as easy to donate medical equipment or a library collection, there are financial and legal considerations I have not even imagined.

THIS IS IN NO WAY TO DISCOURAGE THE PROJECT...I TRULY TRULY HOPE THIS COMES TO FRUITION and wouldn't have put in so much time, effort and opened myself up to so much rejection/derision if I did not think it was so fundamentally and monumentally important.

Posters to this site include lawyers, even those who have argued in front of the Supreme Court, administrators, and those with marketing, fundraising and organizational capacities. If willing, I truly believe they are capable of
bringing this project to fruition.

Flori, you sound like someone who should be able to get participants to list their forte's--organization, fundraising, exploring legal issues, reviewing and writing grant proposals. Alaska and StephN have also jumped in both feet first!

I in no way wanted to imply that these were the only researchers worthy of obtaining samples from the registry, and am now unsure which comes first ..the chicken or the egg, ie do we form the registry(registries if one for each continent) first and then lend the samples out to those who write grants proposals or form the registry and allow the institution to lend out the samples with our wishes known or our input (limited or extensive) or if we make agreements with the researchers first and try to generate the samples to provide and then see if what results stimulates the formation of a true "lending library-type registry". It seems that obtaining help from an institution (Baylor, UCLA, Mayo, Roswell Park...) is more practical since those who post here have everyday lives, cannot be called in to ship off the samples, retrieve them, would not necessarily be available to save them if there were a hurricane (think of all the tumor samples lost in Katrina), and
have no experience in such an undertaking (not to say one can't learn)

Learning from others' experience helps avoid mistakes.

Would one of you like to contact the author of the WSJ article to see if she could put you in touch with those who started registries to see how they did it? Would one of you like to contact the woman starting the melanoma registry to see what problems she has had in the initial phase?

I have put in an email to the gentleman at Washington University who provides tumor samples to researchers (I think his organisation is a nonprofit, but am not sure) and am waiting for an email reply from Dr. Schiff. I am awaiting statistics from Joe to finish my emails to the lady in the UK and the gentleman from Alabama and have emailed the researcher who has a NCI grant to look for markers which turn positive YEARs before clinically detectable breast cancer develops.

I have a full day of other activities(like everyone else) and have already sent off research results to those with more than half a dozen other conditions. That is not to say I won't continue to try to use my attributes (didn't want to say talents) to assist in this project. Let's see who takes on the mantle).
Flori, you have made an auspicious start!