Website and Blog for the Sam McMahon Trust

Posts Tagged ‘Friedreich’s Ataxia’

The Glass Harmonica

09.20.2009 · Posted in Books

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Louise Marley’s novel The Glass Harmonica tells two parallel stories. The first begins in 1761 and concerns a young orphan named Eilish Eam, who earns her keep by playing music on water-filled glasses on the streets of one of London’s poorer districts, until she is discovered by Dr. Benjamin Franklin. Impressed with her talent, he offers her a proper place to stay in exchange for her services in developing and playing his own similar invention, which he calls his glass armonica.

The other, which occurs in 2018, follows Erin Rushton, a professional musician whose specialty is an instrument that evolved from Franklin’s original device. Erin’s brother, the composer of much of her repertoire, is undergoing experimental sound therapy so that he can recover some of the mobility that he has lost through the degenerative condition called Friedreich’s Ataxia (FA). As the novel progresses Erin realises that her glass harmonica may provide the key.

The two tales run concurrently in roughly alternating chapters, converging when each character glimpses or feels the ghostly presence of the other.

Although the reader learns very little about Erin’s twin brother Charlie, his frustration with his disability is palpable. It is also somewhat disheartening that in the world of the novel (2018) a cure for FA is still eluding the medical profession. That said the great strides being made in scientific research around the world give us great hope for the future, and anything that raises awareness about the condition is good for the world of FA.

Friedreich’s Ataxia Symposium 2009

09.06.2009 · Posted in Friedreich's Ataxia Symposium, News

Childrens Hospial of PhiladelphiaThe Children’s Hospital of Philadelphia recently announced the dates for its forthcoming Friedreich’s Ataxia Symposium. Of immense value to patients and families, the symposium will provide people with up-to-date clinical information, therapeutic approaches and current research being conducted in the field of Friedreich’s Ataxia. The symposium will take place on November 13 and 14.

Further information can be obtained from the Continuing Medical Education Department at the Children’s Hospital of Philadelphia at (215) 590 5263.