New Ideas Needed.
 

The HER2 Support Group will soon begin another round of Grant Requests. Our budgets are increasing as we continue to be a major influence with HER2 positive bc patients.

This years budget for cancer meetings alone ( ASCO, AACR, ONS, SABCS, Day of Caring, etc. ) will exceed $30,000.

Grants to our organization are called "Unrestricted Educational Grants". The process starts by our organization proposing a project which includes a budget. The Grantor reviews our request and if a Grant is awarded, the will send us a check. At that point the Grantor cannot influence the project in any way and our only obligation is to send them progress reports.

This process allows us to remain independent and unbiased.

Previous grants included:
Website renovations
Server relocation
and Spanish Translation (In process).

We need new ideas that will improve our organization to benefit our members to include in this years grant requests.

Regards
Joe

Joe,

Some time ago, you talked about hiring a nurse or medical student to "interpret" for us some of the highly technical articles that are posted here. I think this is still a great idea, and that is my suggestion for this year.

Hopeful

I second Hopeful's idea. I too remember when that was brought up about adding a nurse or someone to help us with the abstracts and techical stuff...I've been looking forward to that for some time. That would be a great addition and money well spent. :) Thanks Joe for always thinking of us, and all your hard work.

Chelee

I'd love to see a pamphlet of the stories of some of the Her2 warriors in the waiting areas of clinics everywhere. Information, encouragement, education, and where to get help.

Joe - I also like the suggestion of having a medical person 'interpret' some of the info for us. Mostly I want to say how grateful I am for this site, for you and all your work and commitment to this cause and to us. God bless. Pam

I am in favor of a diet, exercise and supplement section where members can post questions but can also be the depository of studies on diet, exercise and supplements.

It is the biggest way we can not only self help ourselves and each other but to understand prevention and how it all comes together.

Also, I am an advocate of our outreach to the community. How can we reach out in our own communities to make them aware of Her2 Support? In order to grow, we need as many members as possible. A flyer that is specifically written for the newly diagnosed and can be left in cancer centers, doctor's offices and local Breast cancer support groups is the way to go.

I also think it is time to reach out to other groups such as Komen, Annie Appleseed and perhaps others. I am willing to research groups that may align with some of our goals so we can self promote via links to each other etc. Another would be the Young Survivor Coalition. I know I don't have my thoughts on this on a true plan or what it would accomplish yet (perhaps others will comment) but to reach out more fully to the bc community in general. We can discuss Joe.

I will probably have other ideas but was so busy this week (hubby's car blew the engine and we were unprepared to have to go out and buy a new car suddenly - so I have been "out of it" for a couple of days)

Becky,

While you are at it.
Here is a great gift idea. Can you imagine our logo on this baby?

Regards
Joe

WOW! Joe, how did that come to your attention?? Not sure this would qualify for one of the grants!

I had a 1968 XKE that was burgundy and this is so much like it! (Had a well-off hubby at that time!)
Never thought of painting it pink, though.

Oh, such fun memories of driving that car across the country ...
Looks like the price tag would be quite a bit out of my range now.

Wow Joe...my ex husband has our...his 1970 XKE Roadster with only 32,000 miles on it...it is primrose yellow...I remember we had some disagreement over the value of it when we got divorced...Jaguar International appraised it at $37, 000 almost 20 years ago...he said it was worth $12,500...of course I offered to buy it...he wouldn't sell....not for 12,500....it has a sound like no other auto on earth!

Becky suggested:
"I am in favor of a diet, exercise and supplement section where members can post questions but can also be the depository of studies on diet, exercise and supplements."

I agree that topics along this line would be nice to have here for a quick reference. Maybe we the members could add a website address or information to a particular topic.

The topics would be permanent, such as you already have done with such topics as drug side effects, metastasis, etc. only this would be different in that members and guests could add information to the topic. Possible topic ideas:
Diet
Exercise
Supplements
Recipes
Tea
Vitamins
Omega-3's and Omega-6's
Her-2 downregulating foods
Pallative Care
Chemo Brain
Cosmetics

I have these and more topics in my own documents, but newcomers and senior members both would find such topics useful if they could be accessed from this site.

Joe,

Remember that I am here more than willing to help with the Spanish translation or ideas you may have for the new bilingual projects.

Paty

I like Barbara2's idea....A place on the site where we can go to get a list of the diet and exercise wisdom that is shared on this site.

I like the nurse idea too. But I also like our grass roots warrior comaradarie (sp)....(maybe we need spell check. ) I like how we compare notes. And I like how "uncorporate" we are.

Catherine

I agree with the diet and supplement sub-division on this site.Of course, it would be nice if there were more in vitro studies on this topic to justify that the diet/supplements really work in the body and not just in breast cancer cell lines studied in the lab. However, I doubt that you have enough funding for such a clinical trial, but it would be great if you did. Maybe some of this could be directed toward Dr. Menendez's research on olive oil downregulating her2.

I also agree with brochures to be made for hand out, even if we have to print them ourselves at home and give out to local doctor offices etc.

Another thing, her2support could offer is speeding up ways to get cures via a tissue suppository from her2 positives. Lani had mentioned such a while back.

PS Love that pink car, JOE. Tell you what, I 'll do the medical interpretation, being a registered nurse, for one of those-HAHA.

Just bumping this back up to the top for those that may of missed this before.

Chelee

i am walking out the door, but i wanted to comment on this topic about using professionals as a resource..

i would suggest you contact the nearest pharmacy school to your location. most colleges have internship and externship programs for their students.. Here is a list of the colleges that could help you.

Run to Live

Joe, Since I have not been a regular on this site for the past 8 months, I may have missed this answer, but could you reassure me that: In the event you were hit by a bus tomorrow - we would still have our site available. If not, I would like to have monies put aside so that we are assured of a web master - just in case the horrible happens. Wishing to the best of health and a long happy life. Love you, Karen

I too am in favor of a diet/health/ supplement section :)

Stillhere,

Are you planning a surprise for me? As we remain as the only independent internet resource for bc patients who overexpress the HER2/neu gene, I am sure there are many organizations willing to continue our website. The final determination will be up to our Board of Directors.

We have a conference call this afternoon with one of our Grantors to discuss all of these projects.

Regards
Joe

Great News
 

I have just completed our first round of Grant requests and am happy to announce that we will be funded for several of our programs:

1. Professional Review and Analysis - Latest research results interpreted by a medical professional.

2. The HER2 Survival Guide. A publication designed for the bc patient who is HER2 + , medical info, navigating the system, success stories...

3, Luchaportuvida - "Fight For Your Life" A Spanish language breast cancer support website.

4. We will also be introducing a health, lifestyle and alternative medicine section.

Regards
Joe