Keeping Kids Healthy: Living with Friedreich's Ataxia
26:12
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1 year ago
You probably have never heard of Friedreich’s Ataxia – a devastating, genetically-based neurological disorder that progressively takes away a child's motor skills, speech skills, bone and muscle strength – and, ultimately, his or her life. As yet, there is no known cure. In this show you’ll meet the children, families, and doctors who are living and dealing with “F.A”, and see for yourself what can be accomplished through the power of sheer determination, and of a refusal to be defeated, despite the odds.
Guests: David Lynch, MD - Director, Clinical Trial Network for Friedrich’s Ataxia; Departments of Neurology & Pediatrics, University of Pennsylvania
Mary Purdy, PhD - Communication Disorders Specialist; Associate Professor, Southern Connecticut State University, Department of Communication Disorders
Samantha (Sam) Bode - FA Patient, Age 20
Alexandria (Alex) Bode - FA Patient, Age 17 (Samantha’s sister)
Mary Caruso - Sam and Alex’s Mother
Alex Orth - FA Patient
Mary-Lisa Orth - Alex’s Mother
Donovan Simpson - Age 10
Debra Simpson - Donovan’s Mother
Norman Simpson - Donovan’s Father
What is Friedreich’s Ataxia?
* About 100,000 people in the US have an inherited disorder that we call “ataxia,” which means that they have a loss of coordination in their arms or legs, or sometimes in other parts of their body.
* One of the most common forms of ataxia is called Friedreich’s Ataxia (or “FA.”).
* The symptoms include:
o Difficulty with balance (disequilibrium)
o Impaired coordination of the legs or arms (ataxia)
o Thick or slurred speech (dysarthria)
* Symptoms are likely to worsen over time.
* People with FA also are likely to develop curvature of the spine, or difficulty knowing where their feet or hands are in space, or weakness in the hands or legs, as well as enlargement of the heart, irregular heartbeat, or other symptoms of heart trouble (cardiomyopathy).
* About 10 percent of people with FA also eventually develop some hearing or vision loss.
* The first symptoms of FA usually begin between ages 5 and 25, but can sometimes happen earlier or later
Resources:
Friedreich’s Ataxia Research Alliance (FARA)
www.cureFA.org
(703) 426-1576
Email: fara@CureFA.org
The National Ataxia Foundation
http://www.ataxia.org/
(763) 553-0020
www.ataxia.org/
E-Mail: naf@ataxia.orgYou probably have never heard of Friedreich’s Ataxia – a devastating, genetically-based neurological disorder that progressively takes a...all »You probably have never heard of Friedreich’s Ataxia – a devastating, genetically-based neurological disorder that progressively takes away a child's motor skills, speech skills, bone and muscle strength – and, ultimately, his or her life. As yet, there is no known cure. In this show you’ll meet the children, families, and doctors who are living and dealing with “F.A”, and see for yourself what can be accomplished through the power of sheer determination, and of a refusal to be defeated, despite the odds.
Guests: David Lynch, MD - Director, Clinical Trial Network for Friedrich’s Ataxia; Departments of Neurology & Pediatrics, University of Pennsylvania
Mary Purdy, PhD - Communication Disorders Specialist; Associate Professor, Southern Connecticut State University, Department of Communication Disorders
Samantha (Sam) Bode - FA Patient, Age 20
Alexandria (Alex) Bode - FA Patient, Age 17 (Samantha’s sister)
Mary Caruso - Sam and Alex’s Mother
Alex Orth - FA Patient
Mary-Lisa Orth - Alex’s Mother
Donovan Simpson - Age 10
Debra Simpson - Donovan’s Mother
Norman Simpson - Donovan’s Father
What is Friedreich’s Ataxia?
* About 100,000 people in the US have an inherited disorder that we call “ataxia,” which means that they have a loss of coordination in their arms or legs, or sometimes in other parts of their body.
* One of the most common forms of ataxia is called Friedreich’s Ataxia (or “FA.”).
* The symptoms include:
o Difficulty with balance (disequilibrium)
o Impaired coordination of the legs or arms (ataxia)
o Thick or slurred speech (dysarthria)
* Symptoms are likely to worsen over time.
* People with FA also are likely to develop curvature of the spine, or difficulty knowing where their feet or hands are in space, or weakness in the hands or legs, as well as enlargement of the heart, irregular heartbeat, or other symptoms of heart trouble (cardiomyopathy).
* About 10 percent of people with FA also eventually develop some hearing or vision loss.
* The first symptoms of FA usually begin between ages 5 and 25, but can sometimes happen earlier or later
Resources:
Friedreich’s Ataxia Research Alliance (FARA)
www.cureFA.org
(703) 426-1576
Email: fara@CureFA.org
The National Ataxia Foundation
http://www.ataxia.org/
(763) 553-0020
www.ataxia.org/
E-Mail: naf@ataxia.org«
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