Southwest Florida chips in for MDA

Eight-year-old Grayson Tullio beamed as Fox4 host Patrick Nolan stuck a microphone in top of him during a local segment for the annual MDA Telethon.
“Is that thing turned on?” Grayson asked, laughing.

who has Duchenne muscular dystrophy, a ailment that deteriorates muscles and limits walking — was one of dozens of Southwest Florida residents who participated in Sunday’s local segments of the telethon, a Labor day time weekend tradition given that 1966.

Although the telethon was missing its greatest star in comedian Jerry Lewis, longtime host of the country wide telethon who parted ways with MDA this year, the Southwest Florida chapter experienced surpassed final year’s local total raised with $417,964 tallied by midnight Sunday for neuromuscular research, clinics and summer time camp for youngsters acknowledged as “Jerry’s Kids.”

The final total raised locally this year will not be acknowledged until today. final year, the local MDA raised $412,620.

Nationally, the telethon aimed to increase more than the $58.9 million it took in final year. The telethon, which completed at midnight, was shortened to six hours from 21.5 hours final year.

“Every penny does make a difference,” stated Nick Tullio, Grayson’s father.

Grayson, who lifestyles in Bradenton, was diagnosed with Duchenne at age 2 to grow to be one of about 80,000 persons in the United States with some form of the disease, according to MDA.

Grayson has a tough time running, climbing stairs and performing other physical activities.

“The local MDA assists us get in touch with other households impacted by MDA and it assists us go to MDA summer time camps,” Nick Tullio said. “To go to some camp where it is MDA specific will be great for Grayson. It will be an opportunity to forget some of the challenges he has.”

Lehigh Acres’ Janis Sorensen was one local resident who helped increase capital for Grayson and other MDA children. Sorensen, co-director at New existence Assembly Academy in Lehigh, ran a fundraiser for MDA.

Her school raised $903. Evan Agness, 4, was the school’s top fundraiser.

“MDA provided us with one 1 week of instruction in the classroom,” Sorensen said. “The curriculum assists introduce youngsters to persons with disabilities. It assists them understand that youngsters with disabilities are just as valuable as any other child.”

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Sorensen experienced a personal cause to obtain involved. Her brother, James Bell Jr., was diagnosed with MDA in his mid-40s. He recently passed aside in the ailment at age 69.

“MDA was generally great to us,” Sorensen said. “They gave us a wheelchair, a bed, a commode.”

Sorensen didn’t believe Lewis’ departure would harm long term fundraising.

Lewis, who has came out in scores of films and tv shows as well as produced, directed and taught filmmaking, experienced been chairman of the MDA given that the early 1950s, prior to the famed telethon began. In 1977, Lewis was nominated for a Nobel Peace Prize for his work with the telethon.

In August, the MDA announced the 85-year-old showbiz legend would not carry component in the telethon and was no lengthier the organization’s chairman. Neither the MDA nor Lewis have explained why their association of about six decades ended.

“Jerry Lewis continues to be an icon for many, many years, but I think the intent as well as the objective of what he did will reside on,” Sorensen said. “It will reside on because the need is so great.”

Sorensen experienced a personal cause to obtain involved. Her brother, James Bell Jr., was diagnosed with MDA in his mid-40s. He recently passed aside in the ailment at age 69.

“MDA was generally great to us,” Sorensen said. “They gave us a wheelchair, a bed, a commode.”

Sorensen didn’t believe Lewis’ departure would harm long term fundraising.

Lewis, who has came out in scores of films and tv shows as well as produced, directed and taught filmmaking, experienced been chairman of the MDA given that the early 1950s, prior to the famed telethon began. In 1977, Lewis was nominated for a Nobel Peace Prize for his work with the telethon.

In August, the MDA announced the 85-year-old showbiz legend would not carry component in the telethon and was no lengthier the organization’s chairman. Neither the MDA nor Lewis have explained why their association of about six decades ended.

“Jerry Lewis continues to be an icon for many, many years, but I think the intent as well as the objective of what he did will reside on,” Sorensen said. “It will reside on because the need is so great.”

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