Focus on IBC        
September 2009 
IBC Research Foundation Newsletter

NCCN.com

NCCN.com is a website devoted to patients, caregivers, and their families, developed by the NCCN. The website features the NCCN Treatment Summaries for People With Cancer™, the only patient-oriented cancer treatment discussions based on the NCCN Clinical Practice Guidelines in Oncology™. Sections on living with cancer, life beyond cancer, and paying for treatment provide practical tips, resources, and support for patients coping with cancer in their daily lives. In addition, articles outlining cancer basics and cancer prevention, as well as articles for friends and family, support the goal of providing patients, caregivers, survivors, and families with a valuable resource on cancer so they can enjoy longer and better-quality lives.
 
Upcoming  Events 
 
Sept. 25 -
Wellness Workshop; Rockville, MD
 
Sept. 26 -
Speak Out to End Breast Cancer Workshop; National Breast Cancer Coalition; Orange County, CA Click here.
 
Oct. 4 - Lynn Sage Breast Cancer Town Hall Meeting; Fairmont, Chicago, IL Click here. 
 
Oct. 5-6 -
Oncologic Drugs Advisory Committee, Gaithersburg, MD Click here.
 
Oct. 14 & 21 -
Advanced Breast Cancer: Living Well Through Information and Support: Teleconference; 7 pm-8:15 pm ET Click here.
 
Oct. 23-25 - Project LEAD Workshop; Los Angeles, CA Click here.

 
Nov. 4-8 - Quality Care Project LEAD; National Breast Cancer Coalition; Northern Virginia Click here.
 
Nov. 5 - National Breast Cancer Coalition Fund 14th Annual New York Gala Click here.
 
Nov. 14 - The Future of Breast Cancer Care; Living Beyond Breast Cancer Annual Fall Conference; Philadelphia, PA Click here.  


Quick Links for IBC Patients and Caregivers

 
 
 
 
1-877-STOP-IBC
1-877-786-7422
 
 
 
www.ibcbowling.com 
By, Ginny Mason, RN, BSN
Executive Director, ibcRF 
 
 
As the first anniversary of her inflammatory breast cancer diagnosis approached, Julie Bigoski's family thought about how they could celebrate this important day.  It had been a rigorous year of treatments, tests, and challenges but there was light at the end of the tunnel.  Julie's husband, Jack, had become an active part of the Inflammatory Breast Cancer Research Foundation email discussion list since Julie's diagnosis, finding a "home" where he could get information, share concerns and obtain much needed support and encouragement.  When son Tom suggested a bowling fundraiser as a way to celebrate this important one-year milestone, the family agreed it was the perfect way to "give back" for the support they had received and help others in the process.
 
 Jack, Amy, Tom, & Steve Bigoski
 
Tom took the lead, with lots of help and support from his extended family, and proceeded to plan the inaugural IBC Bowling Day for 2004.  It was a rousing success raising more than $9600, in spite of their fears as "novice fundraisers."  With this accomplishment the family vowed to make IBC Bowling Day an annual event.  Each year they have managed to top the previous year's donation, and the 5-year total donated to the Inflammatory Breast Cancer Research Foundation as of August 2008 was $109,719!  Amazing....way to go Bigoski Family!! 
 
Saturday, August 15, while still reeling from Julie's untimely passing and funeral, family and friends pressed on and the 6th Annual IBC Bowling Day took place as planned.  It was important to Julie that the family continue this event even in her absence.  Each previous year Julie baked her "famous chocolate cake", iced and decorated for the occasion to share with the bowlers and others at IBC Bowling Day.  It was her way of celebrating her survival and thanking everyone for their support and participation in the event.  This year the traditional chocolate cake took a different twist.....daughter-in-law Amanda baked and decorated nearly 400 chocolate cupcakes for the event.  What a great tribute to her mother-in-law.
 
Even with the economic woes touching nearly everyone's lives, this year's event was another blockbuster and brought in an amazing $29,555!!!  All the lanes were booked well in advance of the event and lots of people came just for the raffle.  Long tables were set up to handle the dozens of raffle items donated.  This year more than 70 raffle items filled the tables and there were additional "high ticket" special raffle items.  A $10 ea. or 3/$20 raffle included an autographed McNabb & Akers football helmet, 2 tickets (plus field pass) to Eagles vs. Jaguars, and two sets of 4 Diamond Club Tickets to Phillies vs. Diamondbacks, as well as a beautiful women's Movado pink face watch.  The $5 raffle featured a 2-night stay at the Pan American Hotel in Wildwood Crest, NJ.  Not surprising among the most popular standard raffle items ($1/ticket or 6/$5) were the "Lottery Lunacy" baskets and the Wii.  In addition there were gift cards, restaurant gift certificates, and an array of theme baskets designed to tempt even the most tight-fisted.  A listing appears on the official website for the event at www.ibcbowling.com.
 Ginny Mason & Jack Bigoski
This was the third year that I've had the pleasure of attending IBC Bowling Day and accepting the "giant check."  It is amazing to watch how this family plans and orchestrates this event.  Each year adds to their knowledge base making the event appear to have a life of its own.  Tom and Jack could go "on the road" putting on this event across the country (smile.)  This year everything was going so smoothly there was even time for an extra cup of coffee before the crowds arrived.  While the event is hosted by the Bigoski immediate family (Jack and grown children Amy, Tom & Steve) their extended family and many friends are an integral part and the event could not happen without their support.
 
Thanks to the efforts of Steve, the youngest of the Bigoski "kids", there is a marvelous website (www.ibcbowling.com) where you can learn more about IBC Bowling Day and view photos from all six events.  You will see those awesome raffle prizes I described above!!  Steve has done a great job designing and developing the website.  Note the "save the date" for the 7th IBC Bowling Day is already in place.  Mark your calendar for August 21, 2010 and join in the fun at Facenda-Whitaker Lanes in Norristown, PA....guaranteed you won't regret it, even if you don't go home with a raffle prize!
 
While visiting www.ibcbowling.com take a moment to read the "In Loving Memory" tribute to Julie Bigoski, the inspiration for IBC Bowling Day.  I was blessed to call this courageous woman my friend and share these past six years with her and her family.  This amazing woman touched many people and her presence will be missed by all who knew and loved her.
 
On behalf of the Inflammatory Breast Cancer Research Foundation I'd like to offer our heartfelt thanks to the Bigoski Family and all who help make IBC Bowling Day such an awesome event.  Thanks to you, we are able to focus on research and education, knowing we have folks like you to support the work.

Images of Brave Companions  
 
By, Ginny Mason, RN, BSN
Executive Director, ibcRF
 
In 2005, Deirdre D'Aulerio was diagnosed with inflammatory breast cancer.  One of the first things she did was contact photographer/friend Mary Britt asking her to come "right away" and photograph Deirdre and her two-year old son doing all the normal, typical things moms do with their kids.  She wanted a record of these times together taken while she still had hair, knowing the treatment she would start just days after that photo shoot would change that image.
 
As a result of her personal inflammatory breast cancer (IBC) journey, Deirdre wanted to do a calendar to raise awareness, featuring different IBC "warriors" each month photographed with some of the people who supported them during their illness.  She also wanted to include educational information and resources.  It was her father who provided the calendar name: "Images of Brave Companions."  Deirdre presented the idea to Mary asking her to do the photography.  Mary agreed, thus the calendar saga began.
 
Unfortunately Deirdre's disease returned and while she wanted to complete the project it became clear she wasn't able to continue, but held out hope that things would change.  As a final, special request, in the spring of 2008, Deirdre asked her friend Mary to complete the project, the day before she died.  Mary agreed and worked to identify and photograph the remaining models for the calendar.  Working with various professionals and others, she put together pages of educational and support information interspersed throughout the calendar turning it into the awareness/educational endeavor Deirdre had envisioned.
 
Those who view the artistic, sepia toned calendar will recognize the names (if not the faces) of models who participate on the Inflammatory Breast Cancer Research Foundation's two email discussion lists, along with others from the broader IBC community.  One ovarian cancer survivor is featured due to the potential link of breast and gynecological cancers, especially in younger women.
 
In addition to Deidre, the calendar is dedicated to three additional models whose lives were cruelly shortened; Laurie Bermel, Kathleen Lewis, and Julie Bigoski.  As the dedication page reads, "This calendar is dedicated to .......my "calendar girls" who fought the good fight."
 
To view photos and learn more about this unique project, go to www.ibcwarriors.org. The Inflammatory Breast Cancer Research Foundation will receive a $5 donation per calendar IF you'll follow these instructions:  When ordering from the calendar website via Paypal, when you "Review Your Order", type the letters "ibcRF" in the box labeled "Special instructions to the seller."  If you choose to order with a check via mail, simply make a note on the order (perhaps the check memo section) "ibcRF" to indicate the origin of the order.  The Inflammatory Breast Cancer Research Foundation only receives a donation when you indicate "ibcRF" on your order.  Remaining funds from calendar sales support the Deirdre A. D'Aulerio Memorial - Inflammatory Breast Cancer Fund.