Spina Bifida

(Baltimore, MD) -- Kennedy Krieger Institute will join the National Organization for Rare Disorders (NORD) and others around the world in observing Rare Disease Day on February 29. The purpose is to focus attention on the needs of patients and families affected by rare diseases.

"This is a global observance," said Peter L. Saltonstall, president and CEO of NORD. "Individuals and organizations around the world will all be sharing stories of how rare diseases affect their lives."

The challenges of living with a rare disease, he said, include:

Jim Schuyler had a big decision to make last February. Diane Stegman, one of the Program Coordinators for the Therapeutic Family Care program, wanted to know whether he and his wife, Karen, could manage to care for one more child. That day, caseworkers from the Department of Social Services had removed Dante,* a 2-year-old boy with spina bifida, from a home where his needs could not be met.

Loss of bone density is a concern commonly associated with the elderly, for whom a simple stumble can easily result in a painful, debilitating fracture. But a variety of other conditions can make low bone density a lifetime challenge, one best addressed as early as possible.

When Krystal Spencer came to Kennedy Krieger for her regular clinic visit in September, she couldn't resist showing off her baby son Justin. A Kennedy Krieger patient for more than a decade, Spencer is a familiar face to many of the physicians, nurses and therapists in the Outpatient department all of whom were thrilled to see that one of their patient had delivered a healthy baby boy.

For years, people who suffered spinal cord injuries were told that the first six months of their recovery would paint an accurate picture of how they would live the rest of their lives. If a patient recovered any movement, it would probably be in those first few months and, nearly all experts believed, improvement after two years was impossible.

Less than 24 hours after he was born, Philip Keelty had his first major surgery an operation to repair the hole in his spinal column that defines his birth disorder, spina bifida.

For those who wonder if childhood adversity really can inspire remarkable achievements, look no further than Tatyana McFadden. Born with spina bifida, a neural tube defect that prevents the spinal column from closing completely, Tatyana spent the first six years of her life in a Russian orphanage.

(Baltimore, MD) Kennedy Krieger Institute will be joining the National Organization for Rare Disorders (NORD) and others around the world in observing World Rare Disease Day on February 28, 2011. On this day, millions of patients and their families will share their stories to focus a spotlight on rare diseases as an important global public health concern.

(Baltimore, MD) - This summer at the 3rd Annual Festival of Tees golf tournament, miniature golfers of all ages will tee off in a competition for a good cause. ParTee Golf, in Perry Hall, Maryland, will once again host the tournament on Saturday, August 21. All funds raised from this golfing event will go to the Silberstein-Harryman Endowment at Kennedy Krieger Institute to benefit children with cerebral palsy and spina bifida.