Circle of Care for Families with Cancer

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1 Circle of Care for Families with Cancer General Information Contact Information Nonprofit Circle of Care for Families with Cancer Address 144 Danbury Road Wilton, CT Phone (203) Web Site Web Site Facebook Facebook Twitter Twitter At A Glance Year of Incorporation 2008 Organization's type of tax exempt status Organization received a competitive grant from the community foundation in the past five years Public Supported Charity No 1

2 Mission & Areas Served Statements Mission Circle of Care for Families of Children with Cancer is a 501(c)(3), not-for-profit, volunteer-driven organization that supports children with cancer and their families during treatment. Our mission is to provide practical, emotional and financial assistance to Connecticut families of children in treatment for cancer through programs and services that meet the unique and challenging needs of pediatric cancer treatment. Until no parent has to hear the words"your child has cancer," we''ll be here no matter where the journey leads. A Great Opportunity Duende Gala September 15th, 2018 at l'escale, Greenwich, CT Dwen.de/: Passion. Courage. Inspiration. Our theme for the evening comes from an ancient Spanish term that defies translation. Duende, or to have duende, is an expression that refers to an unconscious and powerful inner force that harnesses the strength of one s spirit. Those who have duende possess tremendous soul and magnetism that is both provocative and inspirational. The brave children and families we serve, while facing their greatest challenge, all have a certain duende. We invite you to celebrate their boundless spirit on this special night.the Gala will be a festive evening of dinner, live music and entertainment to celebrate the friends, volunteers and generous donors who support our Circle of Care families. For the past 14 years Circle of Care has helped nearly 2,800 children and families in Connecticut cope with the varied challenges associated with the diagnosis and treatment of pediatric cancer. Since inception, our programs and services have grown and become integral to the experience of families of children with cancer. Whether it is our Bag of Love, filled with the essential items and resources that are needed as newly diagnosed families transition to hospital life, an Art from the Heart children s room makeover, a week at Circle The Sun Sibling Camp, or much needed financial assistance from our Lifeline Emergency Fund, Circle of Care has served as a guide and source of inspiration and support, from the day of a child s diagnosis, throughout the challenging journey, and beyond. Our Duende Gala is a fundraising event focused on recognizing those who have helped us reach our current goal while welcoming those whose commitment will ensure that we have the funds and volunteers to take Circle of Care into the future, with even greater support and resources to offer families battling pediatric cancer. For tickets and sponsorship opportunities please visit thecircleofcare.org/gala A Great Opportunity Ending Date Sept Background Our unique combination of programs address the non-medical needs because we understand the benefits and impact of immediate support in getting through this journey, which can last several years. Our innovative culture is born out of the fact that a child facing a life-threatening illness cannot wait for a bureaucracy to respond the need demands reliability, consistency and a presence in the market; one has to be big enough to provide genuine relief, yet small enough to deliver it personally and effectively. Thus our mission is to provide practical, financial and emotional support, directly to children with cancer and their families, at every stage of treatment: from diagnosis to recovery. While we look forward to the day when a cure is found and our services are no longer needed, we do not provide funding for research or cures as it takes on average $1 billion and 12 years to bring a cure to market. Our experience tells us that our impact is greatest, and the need is most present, in providing direct support to children and families during treatment. Circle of Care was founded in 2003 by three entrepreneurial women whose children battled cancer. They built the program steadily over the years, earning the trust and respect of the medical community, corporations, foundations and individual donors. They have formed enduring partnerships with Yale New Haven Hospital, Connecticut Children's Medical Center (the only pediatric cancer treatment centers in the state) and Maria Fareri Children's Hospital. We also support children from Connecticut who are treated anywhere in the country, including Dana Farber in Boston and Sloan Kettering in New York. Over the last ten years, we have reached over 2,800 families, delivering 2450 Bags Of Love, transforming 115 rooms through Art from the Heart, providing over 16,000 hours of volunteer respite hours and giving over $1,250,000 in direct financial support. Circle of Care, which has earned GuideStar Gold certification, prides itself on running one of the most efficient and effective pediatric cancer organizations in Connecticut. 2

3 Impact We surveyed our program recipients last summer, and 95% reported that we had the highest level of impact on them. * Last year we had our single best year of fundraising in our history, growing our donor pool by over 50%, and the funds raised by nearly 100% over two years. We exceeded our fundraising goals, and consistent with our long-term strategic plan, we were able to bring our first employee on board. Every interaction we have with a child or family in which we are able to provide even a modicum of relief is our most significant accomplishment. We operate with very little overhead, with an abundance of volunteers, because we are about forming a circle around these families and providing the support they need during the most difficult experience of their life. An investment in Circle of Care not only helps children with cancer and their families, but it also impacts the community. An analysis of our program revealed that for every $1 given to Circle of Care, $5.66 is returned to the community, and more specifically for every $1 given to the Emergency Fund, the return on investment is $3.21. We seek to directly support families in 2018 and enlist the support of 300 community volunteers. Sadly, the incidence rates are increasing and last year the demand for our help was up 30%, so there is significant pressure on us to continue to support the children with cancer we serve here in our community. In addition, while there is approximately $450,000 being provided in the market for Emergency Financial Support, our analysis reveals that there is a need of approximately $1 million. Through our Art from the Heart room makeover program, we will inspire community service among high school and college students by enlisting their support to conduct room makeovers for approximately 20 children with cancer. We expect to support of the approximately 525 children in treatment in CT. Needs 50% of the families we support live below the federal poverty level. So for them, the choice between caring for a very sick child and providing for their family is very real. However, 70% of families, regardless of income, experience a financial crisis during treatment. Last year, the demand for emergency financial support increased by over 30%. Our most pressing need is to raise $2 million to meet the basic needs of the population we serve. The need for emergency financial support is significant, and crippling many during a time of emotional crisis. According to the National Cancer Institute, the incidence of invasive pediatric cancers has increased 29% over the past 20 years. Because of advances in treatment, more than 80% of children now survive 5 years or more. In addition, mortality rates for childhood cancer have declined by 66% over the past four decades. The net result is that more children are undergoing longer and more expensive treatments, with families struggling to make ends meet. Although there has been a national focus on health care, childhood cancer costs continue to grow exponentially. As medical debt spirals, the line between solvency and bankruptcy narrows, with over 30% of families declaring personal bankruptcy. A study by the Kaiser Foundation found that the average out-of-pocket expense for a child with cancer is $34,558 per family and the average cost of treatment is approximately $500,000 per child, with 28% of families unable to afford treatment. Based on the number of children in treatment in Connecticut, at least $1.7 million is needed to alleviate the financial crisis experienced by these families. 3

4 CEO Statement I know your child has cancer and you are struggling to find support during treatment and you need help, now, but we just don't have the resources. We can''t help you. I am humbled and honored to serve as the Executive Director of Circle of Care, and I am absolutely determined that a local family whose child is in treatment for cancer will never have to hear those words. We are the last resort first responder -- we are there to provide support when nobody else is around. Thanks to our Board and our founders, Liz and Dawn, we have an exceptional program in place to support children with cancer and their families in Connecticut. While our culture of innovation and excellence dictates that we will always look to improve, the reality is I am fortunate to be walking into an organization that is one of the most respected in its field, that has an unbelievably dedicated board and volunteer network, and a carefully prescribed program that addresses the many overwhelming needs our families face. But we have one very pressing problem: the only thing standing in the way of us being able to close the cancer support gap and fully meet our families' needs rests in our ability to continue to engage people like you, which is why we are so grateful for your continued support. You play a critical role in helping us close this gap. I am fortunate in that I already know what my best day in this job will be the day when we are able to meet all the needs of families facing a cancer diagnosis in their child. Until that day, we will work to close this gap by being a relentless advocate for our families, because I know what it's like to watch someone you love battle cancer. I know what it's like to struggle to care for someone and manage what is already a hectic life. I know that this journey can be really hard, and when it is, that's when we are most needed. So when I look into the eyes of the children I am so fortunate to meet, I don't see their disease, I see their dreams. I know we can't change their path, but if we can bring a little light to that dream, we can truly form a circle of care. To those who might support us, know that we run an effective, efficient organization and your gifts will have a direct impact on children with cancer and their families. A $1 investment in Circle of Care returns $5.56 to the community, but it also transforms lives of children with cancer, right here in our community. Board Chair Statement In 2003 we had a simple idea - to provide comfort and a network of caring parents to those whose children had recently been diagnosed. We founded Circle of Care to fill the gaps in support services available to families of children with cancer in Connecticut. Little did we know when we began that one program would turn into six in just the first 2 years. We have been blessed to work with the best doctors, nurses, child life specialists, and social workers to develop the critical programs that really make life easier for those families facing a cancer diagnosis in their child. Circle of Care has one vision, one mission and one goal: to be there for the hundreds of children and families in CT facing cancer. We are blessed by a cadre of dedicated volunteers; some work tirelessly throughout each year raising funds to support all of our programs while others give generously of their time fostering care and hope through our in-hospital visitation/respite program. Service Categories Primary Organization Category Secondary Organization Category Human Services / Support NEC Health Care / Health Support Areas Served Local State wide Lower Naugatuck Valley Shoreline Ansonia Bethany Branford Cheshire Derby East Haven 4

5 Guilford Hamden Madison Milford New Haven North Branford North Haven Orange Oxford Seymour Shelton Wallingford West Haven Woodbridge Other Circle of Care''s programs are thoughtfully designed to fulfill a family''s emotional and financial needs throughout the long and difficult journey of a pediatric cancer diagnosis in Connecticut and southeastern NY. We offer programs to Yale-New Haven Hospital''s Smilow Cancer Center in New Haven, CT; CT Childrens'' Medical Center in Hartford, CT; and Maria Fareri Children''s Hospital in Westchester, NY, and we also support children and families from Connecticut who are treated out of the area, including Dana Farber and Sloan Kettering. 5

6 Programs Programs Bags of Love Bags of Love provides each newly diagnosed family with a canvas bag filled with essentials for patient and caregiver during hospitalization. These include toiletries, a thermometer, prepaid phone cards, meal & parking vouchers, resource guide, a book and toy for each child, messages of support, and more. Category / Population Served / / Art From The Heart Art from the Heart transforms a cancer patient's bedroom at home into a personal wonderland. The Dream Room is offered by lottery and all the work is done by volunteers. Our goal is to make over a sick child's room into the room of his or her dreams through paint, fabric, creativity and boundless imagination. Category / Population Served / / Lifeline Emergency Funds Lifeline Emergency Fund is a financial assistance program aimed at alleviating some of the financial difficulties experienced by families when their children are undergoing treatment for cancer. With 70% of families facing a financial crisis during treatment, Circle of Care ensures that no parent has to choose between caring for a sick child and providing for their family. With other resources exhausted, families seek funds for basic essentials such as food, gas and housing (mortgage, rent and utility payments). Our program is valued, carefully prescribed and ready to scale, but because our funding is limited and we cannot yet meet the full demand in the market, we work closely with the hospitals to assess where the need is greatest. Working through the social worker, families submit a comprehensive application; following its review and acceptance, Circle of Care makes direct payments to creditors and tracks distribution of funds. The current maximum annual allotment is $2,000 per family. Category / Population Served / / 6

7 Hospital Volunteers at Smilow Cancer Center Circle of Care Hospital Volunteers provide respite care on the pediatric oncology in-patient units. They are available to play/read with the children giving caretakers a needed break or make coffee/snack runs for those who can t leave the floor. Category Population Served None / Human Services, General/Other Children and Youth (infants - 19 years.) / None / None The Purple Pages This book is a compilation of the many wonderful resources available on the Internet, in print and video for families with cancer. Each resource has been carefully researched and reviewed. Category Children & Youth (0-19 years) / Population Served Children and Youth (infants - 19 years.) / None / None Lifeline Emotional Support Lifeline is a support network that connects survivor families with newly diagnosed ones. Category / Population Served / / Circle the Sun - a camp for siblings Circle the Sun, a camp for siblings is a new program offered in partnership with Camp Rising Sun. This program provides a muchneeded resource for siblings of children with cancer as there is only one other sibling camp in the state of CT. By offering this camp we provide respite to parents, and something special for the siblings who both make up the critical care team for the child in treatment. In our second year we had 51 campers registered, next year we expect to reach capacity at 60 campers which represents about 40 families of children with cancer. Category Population Served Program is linked to organization s mission and strategy Long Term Success Human Services, General/Other / Children & Youth Services Children Only (5-14 years) / Families / Other Health/Disability Our goal 7

8 Leadership & Staff CEO/Executive Director Gina Longo Term Start Jan Staff Number of Full Time Staff 1 Number of Part Time Staff 0 Number of Volunteers 200 Number of Contract Staff 2 Staff Retention Rate 100% Staff Demographics - Ethnicity African American/Black 0 Asian American/Pacific Islander 0 Caucasian 3 Hispanic/Latino 0 Native American/American Indian 0 Other 0 0 Staff Demographics - Gender Male 0 Female 3 Unspecified 0 Plans & Policies Organization has a Fundraising Plan? Organization has a Strategic Plan? Years Strategic Plan Considers 5 Date Strategic Plan Adopted Jan 2018 Management Succession Plan? Under Development Organization Policy and Procedures Nondiscrimination Policy Whistleblower Policy 8

9 Document Destruction Policy No Former CEOs and Terms Name Term Jeff Kimball Jan Jan 2018 Formal Evaluations CEO Formal Evaluation CEO/Executive Formal Evaluation Frequency Senior Management Formal Evaluation Senior Management Formal Evaluation Frequency Non Management Formal Evaluation Non Management Formal Evaluation Frequency Semi-Annually N/A N/A N/A N/A Collaborations We work closely with the medical community and others who support children with cancer, including Smilow Cancer Hospital at Yale New Haven Children''s Hospital and Connecticut Children''s Medical Center. We also work closely with Camp Rising Sun, Camp Sunshine, Make a Wish of CT, the Leukemia and Lymphoma Society, among others. Awards Award/Recognition Organization Year Light a Fire Award Moffley Media 2013 Make a Difference - Taste a Difference Award Hood Simply Smart Milk

10 Board & Governance Board Chair Elizabeth Salguero Company Affiliation No Affiliation Term Jan 2003 to Dec 2018 Board of Directors Name Missy Dorsey Ray Eckert Rick Fingeret Bob Hinckley Susan Kobylinski Dawn Ladenheim Karen Morgenbesser Zelie Pforzheimer Jeffrey Salguero Stacey Savas Liz Vega John Weidner Affiliation Wilton RE No Affiliation Cornell Global Board Demographics - Ethnicity African American/Black 0 Asian American/Pacific Islander 0 Caucasian 11 Hispanic/Latino 1 Native American/American Indian 0 Other 1 0 Board Demographics - Gender Male 5 Female 7 Unspecified 1 Governance Board Term Lengths 3 Board Term Limits 0 10

11 Board Meeting Attendance % 100% Number of Full Board Meetings Annually 9 Written Board Selection Criteria Written Conflict of Interest Policy Under Development Percentage Making Monetary Contributions 100% Percentage Making In-Kind Contributions 5% Constituency Includes Client Representation No Board Co-Chair Dawn Ladenheim Company Affiliation No Affiliation Term Jan 2003 to Dec 2018 Standing Committees Advisory Board / Advisory Council Finance Volunteer Board Development / Board Orientation Marketing Development / Fund Development / Fund Raising / Grant Writing / Major Gifts Strategic Planning / Strategic Direction Additional Boards: Advisory Board Members Name Jeanne Marconi M.D. Joseph McNamara M.D. Jennifer Moore M.D. Lauren Riordan Ph.D. Affiliation The Center for Advanced Pediatrics Yale Smilow Cancer Center The Center for Advanced Pediatrics The Waverly Group 11

12 Financials Financials Fiscal Year Start Jan Fiscal Year End Dec Projected Revenue $0.00 Projected Expenses $0.00 Endowment Value $0.00 Spending Policy N/A Percentage (if selected) 0% Detailed Financials Prior Three Years Total Revenue and Expense Totals Chart Fiscal Year Total Revenue $339,346 $283,422 $237,022 Total Expenses $283,133 $277,207 $187,293 Prior Three Years Assets and Liabilities Chart Fiscal Year Total Assets $520,178 $465,659 $477,210 Current Assets $501,305 $450,659 $477,210 Long-Term Liabilities Current Liabilities $8,915 $10,251 $28,011 Total Net Assets $511,263 $455,408 $449,199 Prior Three Years Top Three Funding Sources Fiscal Year Top Funding Source & Dollar Amount American Savings Bank $20,000 American Savings Bank $20,000 American Savings Bank Foundation $15,000 Second Highest Funding Source & Dollar MBIA $15,000 MBIA $13,000 MBIA $15,000 Amount Third Highest Funding Source & Dollar Amount New Canaan Community Foundation $12,500 The Eder Family Foundation $20,000 Nesi Family Foundation $10,000 Solvency Short Term Solvency Fiscal Year Current Ratio: Current Assets/Current Liabilities Long Term Solvency 12

13 Fiscal Year Long-Term Liabilities/Total Assets 0% 0% 0% Capital Campaign Currently in a Capital Campaign? No Capital Campaign Purpose To raise funds to cover the first 3 years expenses for our new office which will enable us to expand our family programming, increase volunteer opportunities and increase efficiency for our staff and board work. Goal $0.00 Dates Jan 2019 to Dec 2019 Capital Campaign Anticipated in Next 5 Years? Comments CEO Comments We don''t meet the threshold yet for an audit, but we can provide 3 years reviewed financial statements if needed. Foundation Staff Comments This profile, including the financial summaries prepared and submitted by the organization based on its own independent and/or internal audit processes and regulatory submissions, has been read by the Foundation. Financial information is inputted by Foundation staff directly from the organization's IRS Form 990, audited financial statements or other financial documents approved by the nonprofit's board. The Foundation has not audited the organization's financial statements or tax filings, and makes no representations or warranties thereon. The Community Foundation is continuing to receive information submitted by the organization and may periodically update the organization's profile to reflect the most current financial and other information available. The organization has completed the fields required by The Community Foundation and updated their profile in the last year. To see if the organization has received a competitive grant from The Community Foundation in the last five years, please go to the General Information Tab of the profile. Created Copyright 2018 The Community Foundation for Greater New Haven 13