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Lifeline: Remembering Lee Koonin, Founder of Lifeline Foundation
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Remembering Lee Koonin, Founder of Lifeline Foundation

Marshall Koonin

 

InaLee Rotbart Koonin died on November 19, 2009. It was her seventy-fourth birthday. It may not be listed in Time magazine as a notable death, but Lee (as everyone knows her) was a surprising woman who accomplished much.

 

Lee was the president of her high school sorority, and winner of the Miss Talent competition in Washington, D.C., in 1950. She met her husband Marshall in high school and they married when they both were eighteen.

 

Within four years of their marriage, Lee became ill. It did not appear to be a life-threatening illness, just something requiring relatively minor surgery. But it changed the direction of her life.

 

A Pioneer and Founder

After multiple surgeries, for what was eventually diagnosed as the newly named Crohn’s disease, Lee dropped to sixty-eight pounds; she was starving to death. This led to Lee becoming one of the first patients to return home from the hospital with parenteral nutrition (PN). In 1977, she received her catheter, or “line,” for the delivery of the lifesaving fluid. This “total nutrition by vein” is common in hospitals and at home today, but it was not common in 1977.

 

Frustrated at almost having lost her life and having to learn on her own about homePN, Lee decided she couldn’t let others be victims of an information vacuum. She founded the Lifeline Foundation, a consumer advocacy organization, and opened her life and medical history to others in order to get something done, sublimating her own shyness. Newspaper articles were written about the “woman who eats while she sleeps.” Lee made guest appearances on numerous television interview shows across the country, as well as on more in-depth shows and national early morning shows.

 

Through the Lifeline Foundation, Lee and Marshall published newsletters, organized picnics, and developed a network of volunteers who were willing to reach out to others using homePN. By 1983, the Foundation was consuming a great deal of their resources. Lee and Marshall met with the newly founded Oley Foundation, and after reassuring themselves that the Oley Foundation would continue working toward the goals so important to Lee, Lee and Marshall handed the Lifeline Foundation over to the Oley Foundation.

 

A Role Model and Advocate

When Lee appeared on Good Morning America, untold numbers of individuals learned the value of homePN and Lee was established as a role model for others. The Time/Life book on nutrition features a whole chapter documenting Lee’s inspirational life and accomplishments. As an invited speaker, Lee has addressed medical societies (unusual for a layperson), and presented major speeches to specialized groups focusing on parenteral and enteral nutrition at their national conventions.

 

When Congress was considering catastrophic insurance in 1981, Lee’s testimony to the House Health Subcommittee was well received. Lee showed how people who were forced to be declared “disabled” in order to finance the substantial cost of homePN were actually “enabled” as a result of the nutrition. Lee encouraged legislation to protect these differently abled individuals to allow them to work and yet retain benefits under catastrophic insurance. Clearly her speech had an impact on the future of employment.

Lee was one of the earliest individuals to identify the problems of lifetime caps to health insurance, and, most importantly, that after beginning homePN, most individuals with an accommodation could begin or return to being fully functioning and employable workers. Her words became the foundation for the Americans with Disabilities Act.

 

A Wife and Mother

Lee really did not want to be a medical trailblazer. She just wanted to be a wife to Marshall and mother to Susan, the daughter she adored. You know, the simple life. She was an accomplished writer and had completed 75 percent of a book about her life and triumphs, as well as short “thoughts” that resembled good Hallmark cards.

 

Lee often said, “Life would be perfect if only the VCR worked,” implying that most of her life was actually perfection, despite how others may have viewed her challenges. As a genteel woman, she would submit to all types of medical examinations, some quite personal. She would draw the line at sticking out her tongue, however, because “a lady never sticks out her tongue.” As Lee’s final hospitalization was concluding and it was relatively clear that her options for recovery were remote, her concerns were completely with her family. In a quiet voice, she told her daughter, “This is breaking my heart.” There are a lot of broken hearts right now.

 

A Champion

Lee’s accomplishments, talents, and humor could fill several more pages, but you get the idea of who she was. She was a true champion, a winner. After going through absolute hell, due to her unbelievable tenacity and desire for life she obtained a better result; she became a productive member of society, a role model to thousands, and an advocate who changed others’ lives and advanced medical science.

Her impact on the world may not ever truly be known, but as one medical professional said to a large group of those fed parenterally, “Lee Koonin is the reason you have survived and are all here today.” Another homePN professional recently wrote, “You have... had such a major role in pioneering the practice of home parenteral nutrition. I am grateful for your long-term impact on that practice which has been so helpful to thousands of consumers.”

 

A wonderful, thoughtful, giving woman was lost, but her legacy will carry on for decades. This death may be little known and not well-publicized, but Lee’s life may have had a great impact on your survival, or that of a loved one.

 

In recognition of Lee’s many contributions on behalf of homePEN consumers, she has been posthumously awarded the 2010 Lyn Howard Nutrition Support Consumer Advocacy Award by the American Society for Parenteral and Enteral Nutrition (A.S.P.E.N.). This award was established in 2009 to honor a HPEN consumer, caregiver, or family member who has worked tirelessly for regulatory change and to increase funding and research for clinical nutrition. It is named in honor of Dr. Lyn Howard, co-founder of the Oley Foundation, who has made significant contributions to patient-centered care throughout her prestigious career.

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This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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