The beginnings of HER2Support

[Cathya]

I would like to reiterate what Sarah said. Just recently an oncologist was shocked to find out that I had herceptin in 2005. It was just brought into Canada that year and I remember women driving to the US and paying $50,000 a year to get treatments. I had asked to be tested as it wasn't a standard test at that time. Today many more women are being identified and treated and are finding this wonderful resource. When this site started and we would go on the internet to gather information I remember the odds for me as a stage 3C her2+ breast cancer patient were around 10% that I would live 5 years. This site offered us information, hope and the awareness that these numbers were no longer correct. So many wonderful, intelligent, resourceful and brave women have and continue to support and educate those of us lucky enough to find this site. We truly are blessed that Christine and Joe recognized the need and had the drive to provide us all with this site. As the story of cancer has evolved and new treatments are discovered this site is also expanding and continues on as a legacy to Christine, Joe and their family.

Thank you

Cathy

[Monica]

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]

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.