If you follow the IBC Research Foundation Facebook page you may already know about the unique relationship that has been developing since last fall with Two Crows Farm.  In the following article, by alpaca farmer Beverly Woody Ham, you'll learn how these beautiful animals and their caregiver are helping support IBC research.  This past June Ginny had the opportunity to meet Woody and many of the alpacas. As they talked, she encouraged Woody to share this story with you, our readers.  We hope you'll be inspired by Pinks with Purpose and consider buying yarn or products made with the yarn....incredibly beautiful and so very soft!

Woody's story:
Our experience of becoming farmers, raising alpacas and finding our home in the mountains of western North Carolina has been littered with serendipitous events and wonderful coincidences. We have been privileged at every turn to see our path marked by road signs telling us we are traveling in the correct direction with our lives. The discovery of the important work being done by Inflammatory Breast Cancer Research Foundation was no less affirming.

While working toward placing our 100% Alpaca yarn product in a retail outlet is the metro Atlanta area, I was exposed to the desire of a shop owner to work on an October IBC fund raiser featuring pink yarn.  I was drawn to the idea and started to do my own research about the disease.  I was amazed at what I didn't know and believed this was an important area of research to support.  The simple act of getting the word out  about IBC to many women and men who are fiber enthusiasts seemed reason enough to jump on the band wagon and support this effort.

I worked with my mill partner and fellow alpaca farmers at New Era Fiber in Tennessee to develop the color pallet representing the gradation of pinks found in the heirloom peony.  The peony had been suggested by the yarn shop owner and by coincidence (?) was one of the remaining heirloom plants in our yard around the 120 year old house on our farm.  The yarn was produced, the photos were taken of our own peonies and the brand "PINKS with PURPOSE" was born.

Once everything was in place, I sent an email to the IBC Research Foundation asking their permission to use the logo and declaring our desire to support the cause.  To my wonder, once again, I heard from Ginny Mason and found out that several of the members of the Research Foundation Team were knitters and spinners. She shared with me how delighted they were to have a fiber product representing the cause and spreading the word about IBC in the fiber community.

We produce 5 colors of PINKS plus a hand painted, variegated version of the colors. The yarn is made from both suri and huacaya alpaca and is available in sport / DK and fingering weights. Two Crows Farm is also happy to support the community around us by employing local fiber artists to create lovely scarves, hat, fingerless gloves and baby items from the PINKS with PURPOSE yarn.  All of these items are available for sale by contacting us.  You can tour the farm and meet the alpacas if you are nearby, buy a gift certificate for someone who is a fiber enthusiast or contact us via email to purchase the yarn or finished goods and help us spread the word and support IBC.

For more information email or call:
info@TwoCrowsAlpacas.com  

828-837-1678
Two Crows Farm Alpacas on fb  

The Inflammatory Breast Cancer Research Foundation has two groups that advise and provide oversight to the organization.  The Medical Advisory Board, comprised of clinicians and researchers in the medical community and the Board of Directors, comprised of patients and others associated with IBC in one way or another.  We've recently welcomed Pat Haugen to the Board. 

Pat is a survivor of inflammatory breast cancer which was diagnosed in 1997, and since her diagnosis has worked to bring the patient's voice to cancer research and health care public policy discussions and decision-making. She is a member of the National Breast Cancer Coalition, serving as the South Dakota State Coordinator and also as a member of the Artemis preventive vaccine project and as a Project LEAD mentor, along with representing the IBC Research Foundation on the NBCC Board.  Pat began attending the annual NBCC Advocacy Conference shortly after completing her treatment and it was at one of her first conferences that she met with the IBC Research Foundation team, Owen Johnson and Ginny Mason, and has continued her relationship since then.  Pat states that she was very honored to be asked to represent the IBC Research Foundation on the NBCC Board and to join the IBCRF Board.  She hopes to make a positive contribution to the important research and awareness missions of the foundation, especially working to better understand, prevent, and treat inflammatory breast cancer.

Pat has participated as a consumer reviewer for the Department of Defense Breast Cancer Research Program, serving on the Integration Panel since 2009, and as Chair in 2011.  She has also reviewed for the California Breast Cancer Research Program and for the American Cancer Society. She is a member of a community Institutional Review Board, is an NCI Central IRB Board Member, and has served on National Quality Forum Steering Committees for Physician Level Quality Measures and Outcome Measures. In 2010 she served, by appointment, on the Advisory Board to the Consumer Operated and Oriented Program, created by the Patient Protection and Affordable Care Act.  She serves on the Program Committee for the Accelerating Anticancer Agents Development and Validation Workshop. She serves as a Mayo SPORE advocate, and has also served as a State Ambassador and Advisory Board Member for the American Cancer Society.

Pat is retired from IBM, having served in a variety of leadership positions, and has more than 30 years of experience in the information technology industry.  She has a B.A. in mathematics and has completed graduate work in Chinese history and completed a Certificate in Public Health from the University of Minnesota in 2009.  She has served on the Board of Trustees, Gustavus Adolphus College, and on the Board of Directors of the Good Samaritan Society, a large non-profit long-term care organization.  She is a graduate of the National Breast Cancer Coalition Project LEAD courses in the science of cancer, clinical trials, and quality care.  

Inflammatory Breast Cancer Research Foundation Executive Directory, Ginny Mason will serve on the Translational Breast Cancer Research Consortium.

"The Translational Breast Cancer Research Consortium (TBCRC) is a collaborative group founded in 2005 to conduct innovative and high-impact clinical trials for breast cancer.  The TBCRC consists of 16 research centers, with member personnel representing clinicians, basic scientists, statisticians, and patient advocates.  TBCRC trials not only test novel, laboratory-based strategies, but also attempt to understand the underlying cause and biology of breast cancer.  Most, if not all, of the TBCRC trials have a specimen submission or tissue banking component."  TBCRC is supported by grants from a variety of organizations.

Ginny serves as the advocate representative for Indiana University Simon Cancer Center along with principal investigator Dr. Anna Maria Storniolo.  (http://www.cancer.iu.edu)  Indiana University is one of the 16 research centers participating in TBCRC.

Each TBCRC member serves on a variety of working groups.  Ginny is active in both the Advocacy Working Group and the Loco-Regional Working Group.  The working groups meet monthly by teleconference and two annual face to face meetings help bring the various working groups together for updates on projects and to focus on the broader mission of the group.  TBCRC currently has a few IBC active protocols in place and Ginny is hopeful that will expand in the future.

To learn more about TBCRC and view active protocols visit:  http://www.tbcrc.org   

The U.S. Food and Drug Administration (FDA) has issued guidelines to give companies that create mobile medical applications, or "apps," a clear and predictable roadmap to help them determine whether or not their apps for smartphones and tablets will be the focus of FDA's oversight.

"The Food and Drug Administration (FDA) encourages innovation and is excited about the prospects that mobile medical apps offer for providing better care and greater patient involvement in their own health....At the same time, FDA wants to ensure the safety and effectiveness of the small percentage of mobile medical apps that could be harmful if they didn't work properly."

Read this Consumer Update to learn more about which apps will, and will not, be regulated by FDA.