Spina Bifida

Spina Bifida Association Education Day

Jun 1 2013 - 9:00am - 5:30pm

Johns Hopkins Hospital
Chevy Chase Conference Center
1800 Orleans St
Baltimore, MD 21287

About the Event:

You are invited to the upcoming Spina Bifida Association Education Day that will be occurring in Baltimore on Saturday, June 1, 2013.

Kennedy Krieger Institute to Observe Rare Disease Day

February 13, 2012

(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:

Feels Like Home

Courtney
McGrath
Foster Care Program Becomes Gateway to Adoption for Children with Special Needs

Davona MillerJim 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.

Building Stronger Bones

Courtney
Jolley
Osteogenesis Imperfecta Clinic extends services to children with a variety of conditions

Logan Insley with Dr. ShapiroLoss 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.

New Life, New Challenges: Young Mom with Spina Bifida Grows with Kennedy Krieger

Courtney
McGrath

Krystal Spencer with Her SonWhen 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.

Reversing Paralysis

Courtney
McGrath
Led by World-Renowned Researcher Dr. John McDonald, A New Center at Kennedy Krieger Revolutionizes Care for Children with Spinal Cord Injuries and Paralysis through Activity-Based Therapy.

Reversing ParalysisFor 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.

A Grateful Gift

Daniel
Valentine
A family's generosity helps advance care for hundreds of children and adults with spina bifida

The Keelty FamilyLess 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.

Racing to Victory

Courtney
McGrath
Teenager Joins Elite Athletes from Across the Globe at Athens Paralympics

Racing to VictoryFor 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.

Millions Around World To Observe Rare Disease Day

January 14, 2011
World Rare Disease Day on February 28, 2011

(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.

Putting a Round for a Good Cause

August 21, 2010
National qualifier miniature golf tournament to raise funds for children at Kennedy Krieger Institute

(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.

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