Carol Anne Clark (www.thecarolhouse.org) was diagnosed with stage two breast cancer in November 2004 and despite her poor health, it came as no surprise to those who knew Carol to discover her outspoken advocacy for herself and her fellow cancer patients, some who were experiencing catastrophic hardship, including being displaced from their homes due to the debilitating and accumulative effects of a loved one's cancer. All this unfolding in the United States, the richest country in the world. Carol Anne Clark found this to be totally unacceptable and unconscionable, and Carol embarked on a David vs Goliath mission to shed some much needed light on the plight and desperate, unmet needs of those without a voice of their own. Those that espouse that the patient care support systems and fiscal resources exist to ease the burden of cancer are living on another planet. I am Carol's husband and I was her full time care giver for seven years and as such, Carol and I were coming into direct contact with cancer patients and their families who had exhausted every avenue of procuring REAL and MEANINGFULfiscal relief, every referral that led to a dead end, and every promised resource that never panned out. These people: mothers, fathers, sisters, aunts, uncles, nieces, nephews etc felt abandoned by the mainstrean cancer establishment and others, and left to fend for themselves. Of all the multifaceted unmet needs of cancer patients and their families that Carol identified, Carol pinpointed housing as the most critical and basic need. Carol thought it crucial that a family should have a roof over their heads, that children and their pets have a back yard to play in, that a loved one with cancer have a safe harbor and a beacon of hope to heal and take refuge in, and most importantly, when Hospice Care comes into the picture, that a loved one be allowed to pass away on their own terms, in peace and comfort, and with a sense of dignity every human being deserves. The real "Facts and Figures" are the ones no one wants to hear, especially those who Carol indicated had a vested interest in these stories of misery and hardship remaning untold and unpublished. They are the stories of untold hardship and financial ruin, of families emotionally torn asunder, often fragmented and left bewildered and financially destitute. Moreover, as Carol's research discovered, not one major cancer organisation has sought to initiate a single social study that would identify the human cost of cancer, break down numbers associated with families being displaced from their homes, highlight cancer patients desperate and unmet needs, and provide important data and information relating to the scant and inadequate patient care support systems and the plight of this segment of the American populace. As part of Carol's advocacy, Carol wrote literally hundreds of letters to just about every cancer related society/foundation and philanthropic institution in the United States. In essence, Carol sought to articulate in a courageous, polite and forthright manner that "CANCER PATIENTS DESPERATE AND UNMET NEEDS ARE EVERY BIT AS RELEVANT AS RAISING HUNDREDS OF MILLIONS OF DOLLARS FOR CANCER RESEARCH (over a trillion dollars since president Nixon declared war on cancer in 1971) AND ARE DESERVING OF EQUAL ATTENTION AND EQUAL FUNDING." Alas, for the most part (but not surprisingly) Carol's heartfelt advocacy and correspndence was met with a deafening silence. This disconnect, lack of compassion and demonstration of a failure to understand and/or recognize the enormous human toll and ramifications that extend far beyond the cancer patient simply served to spur Carol on. Remember, Carol was a very sick woman, and yet, was determined to level the playing field with respect to what Carol and others considered a serious inequality and disparity with respect to funding cancer research and recognizing that a significant segment of the American populace, who for ideological and other rationalizations have remained under represented, marginalized and severely wanting with regards to having their genuine concerns raised in the appropriate forum. In 2012, the Institute of Medicine reported "a serious deficiency in data and available information with respect to cancer patients and their families unmet needs."Carol was mindful that for decades the spotlight has remained focused on cancer research and the race to find a cure, that cancer and the cancer industry have played an influential role in policy making and how federal, corporate and private sector dollars are allocated for cancer research. As a consequence, Carol discovered (through extensive research into her subject matter) that this rose above any norms of insensitivity and that this neglectful and dangerous approach had all but obscured the catastrophic human toll unfolding in America. This was clearly illustrated by the continued silence and insignificance with which the mainstream cancer establishment associated Carol's advocacy and concerns. This set of morally perplexing circumstances presented Carol with a difficult conundrum as to whose priorities were most pressing or of greater consequence, those of the living and destitute, or those of a cure that has eluded the world's finest scientists and researchers for decades? Carol was convinced that their needed to be a sensible and balanced dialogue with respect to this vast funding disparity, but getting someone to listen was another challenge altogether. While Carol understood that a cure would provide the perfect solution, she was also cognizant of the dire circumstances befalling some of her fellow cancer patients and their families. No one possessed more of a vested interest in a cure than Carol Anne Clark, and no one understood more the grim statistics indicating that millions (including herself) all over the world would continue to suffer a most agonizing and heartbreaking demise, many expiring under unacceptable norms of decency, in squalid and unsanitary conditions and deprived of basic patient care support systems. As Carol often opined, "Cancer is not merely about research, but also about the enormous human toll, and taking the appropriate affirmative actions to deliver innovative and creative patient care support systems and REAL and MEANINGFUL fiscal relief/resources formulated to significantly improve quality of life." The Carol House/Carol Anne Clark Foundation is committed to the ideals of the late Carol Anne Clark and seeks through peaceful, diplomatic and educational channels and methods to highlight the desperate, unmet needs of cancer patients and their families who do not have a voice of their own. The Carol House/Carol Anne Clark Foundation is also commited to its innovative housing solutions program which was theinnovative vision of the late Carol Anne Clark and her desire to form a fundamentally different breed of non-profit foundation, one based on putting cancer patients and their families desperate and unmet housing requirement first and foremost, and a not for profit foundation formed upon Carol's three guiding principles and/or core beliefs ... MAKE A DIFFERENCE TODAY, ONE FAMILY AT A TIME, IN ONE COMMUNITY AT A TIME.
Thank you for taking the time to peruse this lengthy posting.
Ron Prudhomme
Executive Director
The Carol House/Carol Anne Clark Foundation Inc
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Hello Ron Prudhomme,
Thank you for sharing your inspirational story. Your late wife's legacy of helping individuals and their families coping with the devastating effects of breast cancer touches and transforms lives.
Regards,
February 7, 2014 - 5:58pmMaryann
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