The beginnings of HER2Support

Monica · 09-05-2018, 04:44 PM

Hi,
I personally spoke to Joe and Christine for a paper I was writing around 2008. I flew out to California and their family were amazing hosts. As background, some time in the 1990’s when HER2 was in its infancy, Christine’s breast cancer had spread to her lungs and brain. After the treatment failed, Christine had done her research and found out about herceptin. She insisted that her doctors test her for Her2. It turned out positive, she got herceptin, and her cancer went into remission. She told me how the website started:

“I sat down at the end of my bed and said to myself, ‘I’m completely well. This was so terrible and I had nobody to talk about it. I’m a health educator. I want other people to enjoy my wellness. How am I going to do that on a large scale?’ During my (breast cancer) search, I had looked for information like crazy but only got dribs and drabs and found most of it not helpful. I asked Joe to construct a worldwide web site for me so I could put down everything I’ve done for myself. I need to tell them, ‘You won’t die.’ Everything I’ve done I’ll put on my web site. Maybe they too can survive . . . Women have so many fears—fear of MRI, fear of chemo . . . So they can survive better and get through it all . . . I wanted a worldwide outreach— not just U.S., but the whole world. I wanted all the resources in one place and more. I did not want to harbor them all to myself. I get survival.”

Her vision for this website still shines through today.
Monica

Monica · 09-05-2018, 04:54 PM

As a follow on to my previous post, here Christine and Joe speak to their values and the mission of the Board.

Christine: "This is a no-nonsense board. It’s not to have a pity party. We’re not here to have a Snoopy dance. I think that’s appalling (on a board). Through our philosophy, we believe in:
 Education - Looking at resources
 Working together as a team − They will find their answer through our web site by a team effort.

Give them a lot of resources. Education is our primary objective. The best way to get through a disease is education, and we do that through our web site.

No one ever does not get a reply. We’re hanging in there to get help, but who should answer, but those that have been there . . .

There is no opportunity to say la, la, la. I say God helps those that help themselves. If there is a will, there’s a way. Kick the demon in the butt!!!"

Joe voiced a similar philosophy:
“The main mission of the web site is to educate women. Don’t rely on doctors. Doctors make bad decisions like people do. The only way to beat this is to become as smart as doctors and work with them . . . “

They were a very unique couple and were truly driven by the mission of empowering women (and men) to help each other with HER2 breast cancer. Doctors are a partner, not an expert.

Although Joe had other income, they spent immense amount of time keeping the board relevant and honing the culture. They were amazing people, did an amazing service to the HER2 Community, and I am personally appreciative of helping me in my time of need.