In the fall of 1994, Harvard Medical School dedicated a HMS quad research building as the Isabelle and Leonard H. Goldenson Biomedical Research Building, recognizing a commitment of $60 million for biomedical research with particular focus on cerebral palsy and related disorders of the nervous system. In his speech at the ceremony, Leonard Goldenson said, “Ignorance and despair were standard treatment for cerebral palsy and other neurological disorders. We are here today to dedicate a facility that embodies and inspires hope and commitment. It will be a place to practice science that was unimaginable when Isabelle and I set out to understand the truth of our daughter’s inability to walk or talk.”

The Goldenson’s first daughter, Genise Goldenson, was born with cerebral palsy and died at the age of 29. In response to this tragic experience, and disappointed with the ignorance and inadequacy of information about cerebral palsy, the Goldensons co-founded the United Cerebral Palsy Association in 1950. With the Goldenson’s steadfast energy and support, the United Cerebral Palsy Association grew dramatically, becoming the 5th largest health agency in the U.S.

In 1992, the Genise Goldenson Research Fund was established at Harvard Medical School to support basic research aimed at treating cerebral palsy and other related neuromuscular diseases. The Goldensons believed that progress in the prevention, diagnosis, and treatment of disorders of the brain, such as cerebral palsy, depends on basic research in neurobiology. By establishing the Genise Goldenson Research Fund at Harvard Medical School, they sought to encourage communication among scientists and clinicians “to explore the universe of the brain for the benefit of people everywhere.”

In addition to the Genise Goldenson Research Fund, the Leonard and Isabelle Goldenson Research Fellowship Fund was also created to support postdoctoral projects, which are clearly relevant to the causes, prevention, and treatment of cerebral palsy at Harvard Medical School and its affiliated institutions.

Leonard H. Goldenson, a graduate of Harvard College and Harvard Law School, was the Founder/Chairman of American Broadcasting Companies (ABC) television network. A graduate of Columbia University, Isabelle Goldenson’s life-long commitment to philanthropy carried on a tradition established by her parents and grandparents. The Goldensons were responsible for taking care of the needs of, raising consciousness about and raising money to fund breakthrough research applicable to people with disabilities. Their use of media (the first telethon) was precedent-setting. They also convinced NASA to adapt the technology developed in the space race for people with disabilities – resulting in the lightweight wheelchair, conveyances that climb stairs, the treatment of kidney paralysis by implanting electrodes behind the organ, utilizing electricity to permit the kidney to function, and robotics. Additionally, they were responsible for conceptualizing the legislation federally mandating every sidewalk crossing in the country be wheelchair accessible, public phone booths include a lowered phone within reach of the wheelchair-bound, designated parking spaces for the handicapped in public buildings and parking lots, motorized lifts on public transport, enlarged restroom cubicles, and ramps in public buildings. They also focused much of their energy on education and pioneered the first collaboration between heretofore competitive universities (MIT and Harvard). This became a template world-over. They envisioned and pioneered the partnership of science and medicine.

The Goldensons are survived by their two daughters, Loreen Arbus and Maxine Goldenson. Loreen Arbus, President & Executive Producer, Loreen Arbus Productions Inc., is the first woman in the United States ever to head up programming at a national network, a feat accomplished twice (both at Showtime and Cable Health Network/Lifetime). Loreen serves with distinction on the board of directors of several national organizations and as President of her family’s charitable foundations, The Isabelle and Leonard H. Goldenson Association, as well as her own Foundation. A leading national advocate for disability rights, Ms. Arbus is passionate about advancing the role of women in science and has established the Loreen Arbus Fellowship in Neuroscience at the Department of Neurobiology at Harvard Medical School. Maxine Goldenson is the president and executive producer of MWG Entertainment.

Doctors use the term cerebral palsy to refer to any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but aren’t progressive, in other words, they don’t get worse over time. The term cerebral refers to the two halves or hemispheres of the brain, in this case to the motor area of the brain’s outer layer (called the cerebral cortex), the part of the brain that directs muscle movement; palsy refers to the loss or impairment of motor function.

Even though cerebral palsy affects muscle movement, it isn’t caused by problems in the muscles or nerves. It is caused by abnormalities inside the brain that disrupt the brain’s ability to control movement and posture.

In some cases of cerebral palsy, the cerebral motor cortex hasn’t developed normally during fetal growth. In others, the damage is a result of injury to the brain either before, during, or after birth. In either case, the damage is not repairable and the disabilities that result are permanent.

Children with cerebral palsy exhibit a wide variety of symptoms, including:

  • lack of muscle coordination when performing voluntary movements (ataxia);
  • stiff or tight muscles and exaggerated reflexes (spasticity);
  • walking with one foot or leg dragging;
  • walking on the toes, a crouched gait, or a “scissored” gait;
  • variations in muscle tone, either too stiff or too floppy;
  • excessive drooling or difficulties swallowing or speaking;
  • shaking (tremor) or random involuntary movements; and
  • difficulty with precise motions, such as writing or buttoning a shirt.

The symptoms of cerebral palsy differ in type and severity from one person to the next, and may even change in an individual over time. Some people with cerebral palsy also have other medical disorders, including mental retardation, seizures, impaired vision or hearing, and abnormal physical sensations or perceptions.

Cerebral palsy doesn’t always cause profound disabilities. While one child with severe cerebral palsy might be unable to walk and need extensive, lifelong care, another with mild cerebral palsy might be only slightly awkward and require no special assistance.

Cerebral palsy isn’t a disease. It isn’t contagious and it can’t be passed from one generation to the next. There is no cure for cerebral palsy, but supportive treatments, medications, and surgery can help many individuals improve their motor skills and ability to communicate with the world. (Source: National Institute of Neurological Disorders and Stroke, National Institutes of Health)

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