Updated January 22, 2014 –
“The IBC world suffered a great loss today. Lori Grennan, the inspiration for much of our work, has passed away. Peace to her family and all who loved her. We will continue on, in her honor, educating and funding IBC research.”
Hope always, from one who loved her like a sister, Terry Lynn Arnold
A tribute was written about Lori, that we feel we must share. She Crawled.
Today is the perfect day talk about the history of The IBC Network. We are in the process of writing a formal history to be placed into press packets for review, creating a useful tool for developing partnerships for our mission. Today, October 4th, I want to share a personal story.
Why today for this post?
Because I never had to crawl to kiss my children goodnight.
Lori Grennan was a young woman I met in my quest to do something, anything to improve the landscape for women diagnosed with Inflammatory Breast Cancer, IBC. Little did I know where a simple facebook message would lead, it was “hey, I hear you live in Houston, can we meet?”
After my diagnosis in the summer of 2007, I scoured the internet looking for any and every thing on Inflammatory Breast Cancer, IBC. The lack of information of a cancer first written about over 200 years ago was shocking. In the process, I started meeting women with this disease. Realizing IBC was not as rare as one might think, I felt more called into action than ever before. I had been pushing for IBC education, writing anywhere I could get posted and it seems my name was being circulated as someone who wanted to champion for this disease and the people impacted by it. That is how Lori came into my life.
Even though many doors were opened to me, more often than not, my requests were met with blank stares:
“You want to talk about what?”
“What is IBC?”
“Look, you are well…or that is so rare, we don’t want to talk about it”.
Even after serving a year on one national breast cancer foundation board, I didn’t feel that IBC was getting the attention needed. It was a lonely and disappointment filled journey.
Little did I know that summer day would be a tipping-point in the ownership of my mission. Lori and I agreed to meet at one of her appointments as I had done with so many others battling this disease. Here I was, sitting with this young woman in her early 30’s in the lobby at MD Anderson. She was bald and thin, with two young kids in tow, seeking treatment for a disease that was ripping her body apart. We talked at length of the need for education, research, research funding and more. Not only was Lori a patient, she was also a family practice doctor. She knew firsthand the lack of IBC education in the medical community. Since IBC had been labeled rare, time devoted to education and funding was rare as well. I shared my frustration as to how to make the best impact. I was turned away by larger charities when I offered to help with education or even raise funds for IBC research. Lori was a cut-to-the-chase person, I can still hear her voice in my mind.
She looked at me with those clear blue eyes and said, “Tell them about me.”
So I did. I started sharing her story, I filed for a 501c3 so we could request donations to fund research. I met with an IBC research doctor that Lori and I both had great respect for, Dr. Wendy Woodward and a project was selected. We worked together to plan our first ad campaign, The Silence is Killing Me and got to work. Lori realized that running a foundation would cut too deeply into the time she wanted to devote to her husband and young children, so she opted to not take a board position, however her influence was strong and she had a voice in our plans. I will write more in the future about Lori and her influence and what she gave the women with IBC, but what I want to share with you today, on her birthday, is a story written by someone reflecting the love she gave her children. Please remember, it was Lori’s dying wish for IBC research to be funded. So please, tell someone about IBC, please donate to our all-volunteer run charity that is funding research.
We need to do better, we must do better. No one should have to suffer this. I know we can do better and I hope you will help us.
Hope always, Terry Arnold