A musical benefit for rare syndrome: Long QT

News October 23, 2013 0 Comments

Sandy Hall with the band Kick It Out.

Sandy Hall with the band Kick It Out.

by Joe Tressa

Sandy Hall’s son Tristan, who is now 13, lost consciousness and passed out when he was 3 ½ years old. This was the first time that he showed any signs of having a type of heart-arrhythmic disorder called Long QT Syndrome.

“This was very traumatic for us because we didn’t know he had it,” Hall said. “It was very fortunate that he didn’t go into cardiac arrest.”

After going to the doctors, young Tristan was diagnosed with the disorder. Sandy was also then diagnosed. The only real way to treat their disorder was to take beta-blocker medication, which keeps heart rates at 150 or under.

This is why Sandy is organizing an acoustic concert benefit event for Long QT Syndrome at the Venetian Social Club, 8030 Germantown Ave on Sunday, Nov. 3 at 6 p.m. All proceeds will go to the SADS (Sudden Arrhythmia Death Syndromes) Foundation and Parent Heart Watch.

Long QT Syndrome is somewhat of an unknown disorder. People who have this disorder tend to have very fast and chaotic heartbeats. This can cause seizures, cardiac arrest, or even death. This disorder is either caused by a genetic mutation or from certain medication or medical conditions that may cause the disorder.

About 4,000 children and young adults die each year from Long QT because they were never diagnosed. In Hall’s case, she passed the disorder down to her son, but like most people with the disorder, she did not know she or he ever had it.

Hall, who is a registered nurse, has wanted to do a benefit concert for a while now, and she finally has the opportunity to do so. As the lead singer of the band Kick It Out: A Tribute to Heart, a benefit concert was a natural. This band plays the songs from the band Heart, which had a great deal of success in the 1970s and 80s. Kick It Out plays many shows in the Philadelphia/South Jersey area. Hall will be performing at this event with her band and will also play some original songs with musician Chris Demuro. Her son, Tristan, will also get on stage and perform a few songs.

(Left) Hall’s son Tristan.

Hall’s son Tristan.

There will also be some notable musicians who will be performing at this acoustic concert. International recording artist Dan Reed, formerly of The Dan Reed Network band, will be performing. Reed and his band were fairly successful in the 1980s and 90s. They opened for world-famous bands such as The Rolling Stones, Bon Jovi and David Bowie.

The band was signed to Mercury and PolyGram Records and recorded four albums during their time together. Reed has also – released four solo albums; his latest “Signal Fire” – was released in February of this year. He currently lives in Prague in the Czech Republic.

Mark Evans of the former glam metal band, Heaven’s Edge, will also perform. Evans founded this band in Philadelphia along with guitarist Reggie Wu in 1987. They were signed to Columbia Records and released two albums before disbanding in 2002.

Hall, who is excited about this concert, would like at least 100 people to attend, as the Venetian Social Club holds about 175 people. She also wants to raise about $3,000 in donations. She also thinks the event can be a good networking experience, too.

“This event could also be a type of networking event for families who also have conditions,” she said.

Tickets for this event are $25 and can be purchased at tinyurl.com/moqzoge. There will also be items available to win via raffle and auction. For more information on this event, contact Sandy Hall at sandyhall@me.com or 215-490-4699.

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