Meet Our Donors
We thank all our planned-gift donors for their generous support. Here are some of their stories.
Kevin Barnes
As a teenager, Kevin A. Barnes expected his life to consist of ongoing bouts of excruciating pain, severe weight loss and periods of missed school, interrupted every two-to-three years by major abdominal surgery. Kevin was diagnosed with Crohn's disease in 1975, at the age of twelve. Following that diagnosis every aspect of his life was impacted by Crohn's. Yet today, Kevin is a successful professional, married for 18 years and active with the Wisconsin Chapter of the Crohn's & Colitis Foundation. Since 1990, Kevin has been a member of the Founders Society, a group of individuals who include a provision in their will or estate plans to benefit CCFA.
What enabled that chronically ill teenager to grow into a successful adult? Kevin gives much of the credit to CCFA, both for its direct impact providing him and his family with education and support in those early years following diagnosis, and for its indirect impact funding inflammatory bowel disease (IBD) research which has led to significantly improved treatments and progress toward a cure.
Kevin recalls how at the time of his diagnosis, the medical field was not familiar with IBD. He initially saw several different doctors who were not able to offer a reasonable explanation as to the source of his symptoms. By the time he was sent to a pediatric gastroenterologist familiar with Crohn's disease, Kevin already had missed a considerable amount of school, which was compounded when he underwent the first of a dozen surgeries. Between surgeries he was treated with a steroid, Prednisone, which helped control his IBD but also blocked the normal growth in height that occurs during teenage years. When taken off the medication, his Crohn's became far more severe. Eventually Kevin needed to receive intravenous feedings, which finally allowed his height to increase from 4'8" to 5'6".
It was during this challenging time that Kevin's parents, along with the parents of several other Wisconsin teenagers with Crohn's disease, discovered CCFA (known then as the National Foundation for Ileitis and Colitis) and worked to establish a Foundation Chapter in Wisconsin. Kevin credits CCFA with improved public awareness about IBD. "Now it is night and day compared to when I was a kid. When I was diagnosed, nobody knew about Crohn's disease. They didn't look for it and there was much less optimism in terms of getting better." Seeing firsthand the positive impact that the Foundation makes, Kevin has been actively involved since the Wisconsin Chapter was established. He is a current Board Member and former Board President. "In addition to its education and support efforts, the Foundation has taken the lead in increasing the amount of IBD research that is done, as well as the direction that research takes," Kevin says. "I am confident that even more can be expected because of the Foundation's work in years to come."
After receiving his Master's Degree, Kevin made a decision to include the Foundation in his will because he "wanted to leave his assets so they would make the biggest difference possible. Knowing what the Crohn's & Colitis Foundation was doing and how well they do it, I felt this was the way I could make the most significant impact."
Kevin's wife Priya is also active within the CCFA community and recently completed the Team Challenge half-marathon in Florida, where runners raised over $1 million for CCFA.
While challenges stemming from Kevin's diagnosis have persisted into adulthood, he remembers childhood as the most difficult time. "When I see young children with these illnesses my heart goes out them. I identify with them and know how difficult it can be. You simply can't do the things that most children have fun doing." Today Kevin has been on Remicade for over two years and – while it is necessary to carefully monitor his electrolyte level due to the shortened length of intestine he has left - his Crohn's disease is largely under control.
Since 1990, Kevin has revised his will several times. Each time, he has felt that the decision was not whether to keep CCFA among his beneficiaries, but rather if he wanted to increase the percentage of his estate that will go the Foundation. Citing the Foundation's research and education programs as examples, Kevin describes CCFA as "driven to make a difference" and feels this particular value has "only grown over the years." He is happy to be part of this process knowing that his gift will help provide the necessary financial stability for these vital programs to continue creating a brighter future for all those diagnosed with Crohn's disease or ulcerative colitis.
Stephen Blank
Stephen Blank is a former National Board President of the Crohn's & Colitis Foundation. He presently serves as a Board Member for the New Jersey Chapter, the successor to the Bergen County Chapter he and his wife Marsha, who suffers from Crohn's disease, helped organize in the mid-1970s. The couple has two daughters, Cheryl and Lisa, both of whom were diagnosed with Crohn's disease in their pre-teenage years. Stephen is a member of the Founders Society, a group of individuals who include a provision in their will or estate plans to benefit CCFA. He has made the Crohn's & Colitis Foundation the beneficiary of a life insurance policy and feels that planned giving is vital for the organization's future. "These gifts allow us to create capital in the future which means CCFA can accelerate its activities today."
Stephen worked for over 30 years as an investment banker on Wall Street, including time spent as the Managing Director of Real Estate Investment Banking of CIBC World Markets, the successor to Oppenheimer & Co., Inc, retiring in 1998. He now serves as Senior Fellow, Finance for the Urban Land Institute. Cheryl, his oldest daughter, has become a pediatric gastroenterologist and Lisa is now the mother of twins. Stephen and Marsha reside in Watchung, NJ.
All told, Stephen has been involved with the Crohn's & Colitis Foundation for nearly 40 years. He has visited over 75% of the Foundation's chapters and worked closely with the Foundation's National Founders, Dr. Henry D. Janowitz, Irwin and Suzanne Rosenthal, and William and Shelby Modell. He does not view his participation as extraordinary. "There is nothing magical about my efforts or my gifts. It is what anybody in my situation would have done knowing the reality of these diseases." Stephen also feels inspired by the work done by those who established the organization and cites how important it is that CCFA "has not lost touch with its roots."
Comparing the Foundation now to where it was in past years, Stephen sees natural growth and significant steps forward. "The budgets for research and education have grown and as a result we are jumping from milestone to milestone much faster." He also commends the organization's leadership and reputation. "CCFA is a national voice. We are right there on the cutting-edge of what is taking place and are leading the way" in the fight for a cure. "The Crohn's & Colitis Foundation has always been a good custodian of money. We maintain high standards in how funds are allocated and have always had very low overhead."
Stephen is pleased to have been able to contribute to the Foundation through the years and sees his planned gift as a way to ensure a financially stable future as CCFA's quest for a cure continues. "We need to continue building an endowment and provide for the next generation of researchers." Stephen encourages others to "join me and my family by becoming a leader in providing revenue for the future."
