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Focus on IBC
December 2014
A newsletter from the Inflammatory Breast Cancer Research Foundation
1999-2014 CELEBRATING 15 YEARS AS THE IBC PATIENT VOICE IN THE RESEARCH COMMUNITY
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Stitching Together Life, Love & Memories
by Ginny Mason, Executive Director
Last year we received a call from a man who had recently lost his wife to inflammatory breast cancer (IBC). Through our conversation he introduced me to Pat, his life companion since they connected in grammar school. Life had changed dramatically for Bill as he tried to navigate this new chapter. He called because he wanted to talk about an idea he had. Pat had been an avid, accomplished quilter and had a 'stash' of fabric to rival the best quilt shop. She had a wonderful workspace filled with fabric, organized by color and pattern. Their home was often the gathering place for a small group of quilters (Pat's Bee) requiring Bill to disappear for a while, but he didn't mind. He recognized her talent and encouraged Pat in her work.
Pat belonged to a large quilt guild in their community and Bill worked with them to plan a unique fundraiser. He wanted Pat's stash of fabric to be auctioned off to raise money for IBC research and needed the guild's help. They rose to the occasion and held two auctions raising over $5000! It was an exciting and emotional event as people wanted to remember Pat and her accomplishments while supporting needed IBC research and education. Recently, Bill called again to share some news. Last month, through their quilt show, the Farmington Valley Quilters wanted to honor the lives and talents of three of their members who had died in the past two years. In preparation for the show, members of Pat's Bee approached Bill about finishing a special quilt Pat had been working on but hadn't finished before her death. Together they completed "Pat's Masterpiece" and it was displayed during the show. Pat had hand stenciled and had pieced the Star Blocks for the 19th Century reproduction quilt. Bill knows that I'm a quilter and offered to send some photos of the quilt. Pictures probably don't do it justice but it is spectacular! I'm in awe of her talent. As we talked, Bill shared that Pat would have been 80 this month and to honor her memory he planned to make a donation. Through her quilting, the auction, and the quilt show Pat has managed to touch many lives who may have never heard of IBC. Thanks to Bill's generosity and that of the Farmington Valley Quilters, more people will be reached and research will be funded.
Like those of us who have to find our "new normal" after a diagnosis of IBC, Bill is working to find his "new normal." He knows he is blessed to have beautiful quilts to remind him of the love and special memories he and Pat made together. Both will help keep him warm these cold winter nights.
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Online? Offline? You Decide!
Some of us like to shop online, some of us prefer to shop offline. We have added an offline option for ordering Inflammatory Breast Cancer Research Foundation T-shirts, pins, bookmarks and brochures. To shop our online store, see link in lower left column of this newsletter.
There is an order form to download, print, and mail with your check for those in the U.S., and another form for our Canadian friends. Simply click the appropriate link below: [.pdf, 1 page]. U.S. Order Form Canada Order Form
The new bookmark has been revised and updated. The new brochure is terrific for those who want to know more about IBC and the IBC Research Foundation. The common symptoms list now has illustrations and there are sections on diagnosis and treatment. Nominal cost covers printing and shipping.
Be sure to look at the size availability for t-shirts before you mail your order. Some sizes are sold out, and will not be restocked.
And we have a donation form, too! [.pdf, 2 pages]
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It's Not Too Late to Make a 2014 Donation
Have you been following our Crowdrise funding campaign celebrating our 15th birthday? We had hoped by this time we'd be ready to invite researchers to submit research proposals. But sadly $2000 isn't going to fund much research.
We're counting on you to help us reach our goal of $15,000 (more would be even better) so we can fund a research project in early 2015. Ask your family and friends to help you celebrate your birthday or cancerversary by setting up your own fundraiser on our event page. It only takes a few minutes to set up and then invite people to participate.
Click on my fundraiser page and see photos of some of the people who have accepted my KISS IBC GOODBYE challenge. Recognize Rob Marciano from Good Morning America or #34 DeAngelo Williams of the Carolina Panthers? They, along with many others, want to see an end to this crummy disease and agreed to support research. How about YOU??
Your newsletter editor, Carol, also has a fundraiser page. Carol does not go around kissing celebrities, but only because she doesn't know any! Donate $50 or more in December on Carol's Hats Off!CR page for a chance to win one of her cool, slouchy hand knit hats.
Your donation will also help the Inflammatory Breast Cancer Research Foundation reach our goal of funding important, patient-focused IBC research. It's quick, easy and will make a difference in the lives of those dealing with IBC.
Our heartfelt thanks to all those who have so generously donated their time and financial support over the year. It's time I get busy and make my own annual gift....will you join me??
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Patient-Centered Care Across the Cancer Continuum
by Ginny Mason
The inaugural Palliative Care in Oncology Symposium sponsored by ASCO (American Society of Clinical Oncology) was held October 24-25 at the Westin Boston Waterfront.
For too long we've considered palliative and hospice to mean the same thing. No wonder patients seldom bring up the subject, it conjures up hopelessness, the end. Cancer.net explains palliative care: "Cancer and its treatment often cause various symptoms and side effects. An important part of cancer care, no matter the diagnosis, is relieving these symptoms and side effects. This is called palliative care, symptom management, or supportive care. However, palliative care is more than receiving a drug to ease physical symptoms.The goal of palliative care is to support your physical, emotional, spiritual, and social needs from diagnosis through treatment and beyond."
Isn't that what we all want? True "supportive care" to not only get rid of the cancer but deal with the collateral damage caused by those very therapies intended to get rid of the cancer. How great would it be if the treatment team would offer these services rather than waiting for the patient to ask for help with sleep problems, nausea, family issues, and the list goes on. That's the overarching goal of palliative or supportive care.
Defining the need and value of palliative care was one focus of the symposium. While most agree that we need to provide those services it's not always clear who will provide them and how they'll be reimbursed. Novel programs to bring palliative care to patients were shared by presenters and we also heard about the long hours and high burn-out being experienced by palliative care specialists.
Dr. Jennifer Temel, from Massachusetts General, stressed the need to integrate palliative care into oncology but admitted the challenges involved. She and symposium co-chair, Dr. Michael Fisch, along with patient advocate Holly Anderson, explain palliative care in this excellent video.
Thanks to the Conquer Cancer Foundation for the scholarship support I received to attend this symposium. Read more about palliative care on Cancer.net.
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A big "thank you" to two businesses who have shown their support for the Inflammatory Breast Cancer Research Foundation recently!
Chico's in West Lafayette, IN, donated 10% of sales October 16, 17, and 18.
Derby Salon in Seattle, WA, had their annual Beautify Event on October 25. Big cyberhugs to all who participated in this event for the 8th consecutive year. Keep up the great work educating and beautifying Seattle, one person at a time.
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