In the cancer community we tend to think in 5 year increments, perhaps because statistics are usually rounded into 5 year blocks. That said, it's worth noting that this month the Inflammatory Breast Cancer Research Foundation celebrates its 15th birthday, no small accomplishment! A birthday tends to bring about reflection along with celebration. There are a lot of things I could mention as I reflect on highlights and accomplishments but right now I'll just mention a few and save others for upcoming issues of the newsletter.

In the late 1990's the internet was nothing like it is today! Many people could only access the internet at work or perhaps the library. When I met the group of people who would later become the Inflammatory Breast Cancer Research Foundation, I was going into work early so I could use the computer to complete a project required for my  bachelor's degree in nursing.  I was researching how the internet might help connect people with less common cancers and stumbled upon Owen, RK, Lee, Mare, and others who were chatting via a support web group. I was excited to find others who had IBC or at least knew about it and that they were interested in research, my passion. 

The first documented outreach was happening even before the official 501 (c)(3) paperwork had been filed. Lee was struggling to access Herceptin� through a compassionate use program in Canada without success. Frustrated, Lee reached out to Owen Johnson, founder and President of the Inflammatory Breast Cancer Research Foundation for help. As Lee herself said, "Immediately hope reared its head as Owen Johnson and a group of twenty or so members launched themselves into battle mode for me. I was a cyber stranger but we were all struggling in a common cause." Over the following weeks a flurry of emails, phone calls, and faxed letters were going here and there, all on Lee's behalf. It was an uphill journey but on July 13, 1999, Lee received her first Herceptin� treatment. As Margaret Mead has said, "Never doubt that a small group of thoughtful, committed citizens can change the world; indeed it's the only thing that ever has." Clearly thanks to Owen Johnson and this "small group of committed citizens" those words proved  to be true. With this heroic act, the Inflammatory Breast Cancer Research Foundation was off and running.....and we didn't even have that little special paper yet from the IRS!! Learn more about this accomplishment.

It can be tough for a small, "kitchen table" non-profit to gain respect and acceptance in the medical community. An advocacy organization usually has to prove themselves worthy before being taken seriously. Fast forward to October 2004. You can imagine our surprise when Dr. Neil Spector, then of GlaxoSmithKline, contacted us about helping develop a clinical trial using lapatinib (Tykerb�) in IBC. Dr. Spector noted several patients in the Phase I study had a dramatic response to lapatinib. Turns out these were IBC patients, so he went to the "powers that be" to suggest an IBC specific trial using lapatinib. Dr. Spector realized the importance of involving patient advocates early in the process so the trial would be "patient friendly" and provide good results. The breast cancer community was shocked at how quickly the trial filled and when the results were presented at the San Antonio Breast Cancer Symposium we were sitting front and center, wearing big smiles, as the IBC Research Foundation received credit for helping complete the trial in record time.  We're grateful for the enduring relationships that developed with clinicians around the world as a result of that trial and have since had the opportunity to be involved in additional clinical trial initiatives. We thank all the patients who participated in that trial and Dr. Spector for speaking up for those of us with IBC.

There are lots more accomplishments and good memories I want to share but I'll save them for future issues. Has the Inflammatory Breast Cancer Research Foundation made a difference in your life? Do you have a story you'd like to share?  Send it to us and your story might be chosen for publication in a future edition of Focus! 

This story actually began when I met and married my lovely wife Barbara (B�rbel) in Berlin, Germany in 1965 while I was stationed there with the U.S. Army. Fortunately the inflammatory breast cancer journey didn't start until many years later.

In 1999, just six weeks after having a mammogram and a sonogram, Barbara felt that her right breast was swollen and hot and contacted her doctor right away. The doctor ordered a biopsy, and before she woke up the surgeon told me that it was cancer. After the usual wait over the weekend (always hate them) we were told that it was Inflammatory Breast Cancer and that Barbara had 18 months to live. When asked how many women with this cancer he had seen, he said, "two, one lady waited too long and died the next day and you are the other one."

We realized that this doctor could not help us, so we went home and started making phone calls. One of Barbara's coworkers had completed breast cancer treatment, and suggested her doctor in Salt Lake City. That doctor asked us to be there the next morning, so off we went! All the tests had been arranged ahead for us and the next morning we had the results. Barbara started her chemotherapy that day. After eleven months of chemo, the surgery, and radiation she was finished with treatments. Barbara has had complications like lymphedema and chemobrain, but the chemobrain has subsided and today she is doing wonderfully.

At the time, we didn't know about the Inflammatory Breast Cancer
Research Foundation, we discovered it after she was done with treatment. It was such a great help to have women in email discussion group respond to her questions about life after chemo. It has been
fifteen years since Barbara's diagnosis and we are enjoying our grandchildren and new great-grandchildren that we never thought we would be able to do. We have done a lot of traveling and love our new normal. 

Barbara is one of those folks that refuses to use a computer so I have always posted for her as "Don for B�rbel from Berlin." She has phoned numerous women through out the United States and Germany answering any of their questions as we went. In every doctor's office we visit, we ask the nurses if they have heard of IBC and are astounded that so many haven't. We leave brochures everywhere and hope that new IBCers find the Inflammatory Breast Cancer Research Foundation to help them along their journey. Barbara's complete story is on the Inflammatory Breast Cancer Research Foundation website. We want to thank all of the women and men who have encouraged us along the way and wish all the best to the new ladies that have joined our journey.

[Editor's note: for information about the IBC Research private email discussion list that is a private email discussion list accessible only by members, not a part of Facebook, visit this page.] 

1. Make a donation "in honor of" or "in memory of", someone you know with IBC. Have fun with the 15 year birthday and donate a multiple of $15 -- $30, $45, etc. Or add zeros -- $150, $1500, $15,000! See the donate block at the upper left of this newsletter.

2. Everyone likes games at a birthday party, right? As we kick-off this year long birthday celebration we invite you to play "ibcRF not-so-trivial trivia" challenge!

Here's the question -- in the photo essay "one woman's journey with inflammatory breast cancer" in what year was she diagnosed with IBC? 

The answer can be found somewhere on our website. When you think you've identified the right answer, write the answer (legibly!) on a piece of paper (or a $10 or $20 bill!!) as well as your name, address, phone number and email. Send it to: Inflammatory Breast Cancer Research Foundation, P. O. Box 2805, West Lafayette, IN. 47996.

Your entry must be received by 8/25/14 to be eligible to win an awesome prize from our prize closet. One winner will be randomly chosen (by a non-biased neighbor) from all the correct answers.

3. Volunteer your time and talent. Contact us by email, online form or phone and say "I want to help!"