Special Events Stories & photos

Thanksgiving Disco Fever Concert
November 6, 2010

By Joanne Sperando-Schmidt
PH Patient and New York Fun Walk Organizer

Left to Right: Jean Steck, Joanne’s husband Ken, Joanne, Kerri and JuanLeft to Right: Jean Steck, Joanne’s husband Ken, Joanne,
Kerri and Juan Rubio at the Disco Fever Concert

A Grieving Family Finds Strength Through Raising PH Awareness

Kerri Rubio is one determined lady. Not only has she participated in the New York Fun Walk many times, but she recently organized a dinner fundraiser and, through those efforts, connected with a local radio fundraiser to further raise PH awareness and benefit PHA programs.

Kerri and her husband, Juan, are resolute that no other family should have to experience a loss as they have. Their 14-month-old daughter, Kayla, passed away in August 2008 after battling severe pulmonary hypertension. Just two months later, Kerri and Juan attended the 4th Annual New York Fun Walk to walk in Kayla’s memory and participate in the memorial balloon release. They’ve attended the walk every year since then.

Now they are turning their grief into further action. On October 9, Kerri and Juan organized a dinner fundraiser. They contacted their local businesses, who donated food and other items. They also held a raffle of donated items, and the event raised $3,000.

While planning this event, Kerri contacted a local oldies radio station, B103, on Long Island, N.Y. She was put in touch with Mickey B, a writer/singer/producer known as “The Prince of Rock n Roll.” When she told Mickey the story of Kayla’s battle with PH, he immediately wanted to help. Mickey was producing a charity event on November 6, the Thanksgiving Disco Fever Concert, with many artists from the ‘70s. Three other charities would be present and have the opportunity to raise money to benefit their organizations, and Mickey added PHA to the roster. On October 2, Mickey attended the New York Fun Walk to promote the event. He addressed the crowd and got everyone dancing; he even held an impromptu dance contest and gave away two tickets to the disco concert on the spot.

On the night of the concert Kerri and Juan set up a table with lots of information about pulmonary hypertension and a poster board that told Kayla’s story. Together with Juan and Kerri, my husband Ken, my friend Jean Steck and I worked the lobby as concert attendees arrived, selling tickets for a 50/50 raffle and telling all who’d listen about PH and our efforts to raise awareness and funds for research. We were thrilled when the winner of the raffle donated his winnings right back to PHA.

Kerri and Juan Rubio aren’t done and promise to continue their efforts in Kayla’s memory and on behalf of all families affected by pulmonary hypertension. We are so lucky to have them fighting with us.

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.