Rock the house on December 11

Holiday Express, an all-volunteer band whose mission is to deliver music, food, gifts, financial support and friendship to those in need during the holiday season, will make its annual visit to Matheny on Sunday, December 11.

The Monmouth County-based organization is made up of about 1,300 volunteers including more than 80 professional musicians. Founded in 1993 by restaurateur and musician Tim McLoone, Holiday Express visits some 50 institutions every year between November and the end of December. The band also performs every May at the Matheny Prom, held at the Skylands in Randolph.

While most of the band members are from Monmouth County, there are some local participants: Byron Smith from Bedminster, Alan Grant from Bridgewater and Anthony Perruso from Rockaway. In addition, a Matheny parent, Jim Yedloutschnig of Cedar Grove, whose daughter Alicia, is an adult patient, often joins the band’s trumpet section.

Matheny students, patients and their families look forward to the Holiday Express event every year. Highlights include participation by the Matheny Choir, the signature HE song, “Nobody Ought to Be Alone on Christmas” and the group competition on “The Twelve Days of Christmas.”

The concert will be held from noon to 2 p.m. on Sunday, December 11, in the Robert Schonhorn Arts Center on the Matheny campus in Peapack.

Above:  Holiday Express band member Byron Smith with his daughters, Courtney, left, and Jordan.

Below: Matheny student Bryan Desatnick with the Holiday Express dancers.

When he was 17, Matthew was hospitalized for six weeks as the result of a decubitus ulcer, a bed sore that develops from lying or sitting in one position too long. “It was sort of God’s way of telling us we couldn’t handle his medical problems anymore,” says his father, Don. Four months later, Matthew was admitted as a resident at Matheny. “It wasn’t easy,” says his mother, Marie, “but we know this is where he needs to be. It’s just a phenomenal place.”

Adds his father: “Everybody’s so professional, caring and competent. Everybody knows Matthew’s name. We can’t believe it.”

“Everyday,” says Marie, “we thank God for the people who work here and for the passion they have for our child and everyone else.”

Matthew, one of nine “Special Stories” we’ve highlighted in our new publication, which you can download here.

For the third consecutive year, Matheny will be receiving a Percy Award from the Healthcare Planning and Marketing Society of New Jersey for Best Small Hospital Public Relations/Media Placement. This year’s awards will be presented at HPMSNJ’s annual meeting on December 9 at the National Conference Center of East Windsor in East Windsor, N.J.

Matheny’s award is for its partnership with CBS New York television and radio stations to promote Miles for Matheny, an annual fundraiser and community event, held April 17. WCBS-TV Channel 2 provided on-air news coverage, aired a public service announcement featuring news anchor Don Dahler, placed it on the CBS New York website and promoted it among its employees.

In addition, WCBS Newsradio 880 produced a video of Matheny’s visit to the Clinton, N.J., Public School to demonstrate the use of adapted physical education equipment. The video, featuring news anchor Wayne Cabot, appeared on the station’s website. The audio was played on-air, followed by live promos for Miles for Matheny.

HPMSNJ is the local chapter of the Society for Healthcare Strategy and Market Development (SHSMD). Started in 1979, HPMSNJ serves healthcare planning, marketing and public relations professionals in New Jersey and surrounding states.

Above: Matheny presents “Certificates of Appreciation” to WCBS-TV.  From left, Steve Proctor, Matheny president; Kevin Ralph, Matheny chief development officer; Peter Dunn, president, CBS Television Stations; Don Dahler, WCBS-TV news anchor; and Eric Berlin, WCBS-TV weekend producer.

Below:  WCBS Newsradio 880 presentation, from left: Kevin Ralph; WCBS Newsradio anchor Wayne Cabot; WCBS Newsradio news director Tim Scheld; and Steve Proctor.

The Matheny Muses, an eclectic group of young artists and performers from Matheny’s choir, performed Lady Gaga’s “Just Dance” at the 9th annual Express Yourself New Jersey. The event, held November 13 at the Montclair Art Museum in Montclair, NJ, was sponsored by ArtWorks: The Naomi Cohain Foundation.

The Matheny Muses selected “Just Dance” in order to share their love for singing, dancing and playing music, hoping it would inspire the dancer within everyone. Although the Matheny students are all in wheelchairs, they feel music reminds them not to sit in defeat but to move to the music, making them feel as if they were back on their feet. The Music Therapy program at Matheny uses various types of music to enhance and improve students’ and patients’ cognitive, physical, emotional and social skills, helping them realize their potential in society.

ArtWorks, the event’s sponsor, provides children and young adults suffering from chronic and life-threatening illnesses, and their siblings, access to creative and performing arts programs that encourage the use of the creative process as a vehicle for healing, communication, self-expression and personal development. Express Yourself is a creative and performing arts exhibition that provides these children and young adults with an open and loving forum to express themselves through the arts. In a safe environment, filled with families, friends, healthcare specialists and ArtWorks supporters, these children sing, dance, recite poetry, play instruments and stand proudly by their works of art.

Above: Music therapist Megan Chappius conducts the Matheny Muses as they perform Lady Gaga’s “Just Dance.” From left, students Yasin Reddick, Bianca Mathis and Jameir Warren Treadwell; music therapist Greg Perkins; and student Najee Rogers.

Below: Matheny student Bozena Geraghty uses her feet to play the keyboard, assisted by music therapist Alissa West.

James, who has cerebral palsy, was admitted as a resident at Matheny in 2003, just before his 10th birthday. James can’t walk or talk, but according to his mother, Cathy, “He seems to understand everything.” He has learned to communicate using interactive symbols on an electronic augmentative communications device. “He’s a very smart kid,” says his teacher, Peggy Zappulla.

Having James reside at Matheny has increased the quality time he’s able to spend with his mother and sister. “When your child is happy and comfortable,” says Cathy, “you can enjoy him instead of only caring for him all the time.”

James is one of nine “Special Stories” we’ve highlighted in our new brochure, which you can download here.

When his mother, Estela, first brought Nicholas to Matheny, he could not stand up, and his body was floppy. Nicholas has Lennox-Gastaut syndrome, a severe form of epilepsy. Since then, physical therapists have been working with him on standing and stepping, sitting, posture and trunk strengthening.

Occupational therapy concentrates on trying to get him to reach and explore his environment with his hands. Speech-language pathologists work with him to use switches in order to communicate on a basic level. And Matheny’s seating and mobility clinic designed a chair that is a hybrid between a stroller and a wheelchair.

Today, says Estela, “His legs are stronger. He’s very alert. He’s saying some words. He’s eating well.” And it’s all due to his therapists: “I love the way they treat him.”

Nicholas is one of nine “Special Stories” we’ve highlighted in our new brochure, which you can download here.

Kaila was born with spina bifida and a condition called cri du chat syndrome, a rare genetic disorder causing intellectual disability and delayed development. When she was 14 years old, her parents, Tad and Kim, decided Kaila had outgrown her special services classroom in her public middle school.

Their goal was to help her be as independent as possible. That is being accomplished at Matheny. “She can feed herself and move from room to room in her wheelchair without our help,” Kim says. “And, though she is not very verbal, we can see how happy she is. It’s just amazing the love the staff has for our child.”

Kaila is one of nine “Special Stories” in our new brochure, which you can download here.

At birth, Jenna seemed fine. But when she was one year old, an MRI revealed some brain malformations, and at about 18 months, an EEG uncovered Lennox-Gastaut syndrome, a severe form of epilepsy.

The therapists at Matheny, says her mother, Lauren, “are doing a great job with her.  They have worked really hard to find just the right setup to support her. The therapists at Matheny are very devoted. They’re very creative. And they don’t give up.”

Jenna is one of nine special stories in our new brochure which you can download here.

Whitney Weldon is not your typical Georgetown University freshman.

In April 2001, then-9-year-old Whitney was diagnosed with fibrodysplasia ossifcans progressiva (FOP), a rare genetic disorder characterized by the abnormal growth of bone in soft tissue. In cases of FOP, muscles, tissues and ligaments actually develop into bone, progressively immobilizing the patient.

In March 2011, as Whitney was getting ready to enter Georgetown University in the fall, she and her parents, Bill and Hilary Weldon of New Vernon, visited Matheny. Whitney’s mobility was extremely limited, but she was not able to use a conventional wheelchair. She and her parents were hoping therapists and rehab technicians could evaluate her for adaptive equipment that would make her adjustment to college easier.

Matheny recommended the Permobil C500, a front wheel-drive power wheelchair with a standing feature. “This model allows the seating system to come up to meet her,” according to Jon DaSilva, Matheny rehab technician. “And we added custom foam in places to help with her comfort level.”

At first resistant to using a wheelchair, Whitney has since grown to embrace it. “I’m doing great,” she says. “I can get around faster than if I were on foot, and I have the freedom to get out of it if I want to.” Some of her early reluctance, she admits, was because she worried it would be a deterrent to meeting new people. But the wheelchair, she says, has actually contributed to the fun of the college experience: “I can get places quicker. People don’t have to wait for me. I have to wait for them now.”

Permobil, based in Lebanon, TN, develops, manufactures and markets power wheelchairs and transport and communication systems for people with functional disabilities. DaSilva says Stephen Burke, Permobil’s representative in northern New Jersey, “has been a huge resource for us, not just with Whitney but with other clients as well.” Whitney appreciates that Matheny has given her a Permobil contact in the Washington, DC area. “If I have a problem now,” she says, “they will send someone to make any adjustment I need.”

While Permobil can be a huge boon for FOP victims, there remains a tremendous need for research funding for the disease. The Weldon family, through the Weldon FOP Research Fund, has raised awareness and millions of dollars for the FOP Laboratory at the University of Pennsylvania School of Medicine. To learn more, visit the Weldon Fund.

“What’s really good about the recreation therapy program at Matheny,” says Leah Friedman, “is that the students and patients aren’t identified by their disabilities; they are identified by their likes and dislikes.  You don’t just look at someone and say, ‘Oh, he has cerebral palsy.’ You look at him and say, ‘He likes to play soccer.’”

Friedman, shown here in yoga class with a Matheny student, grew up in Short Hills. She spent 15 weeks at Matheny this past summer, splitting her time between working with adults in the Adult Services program working with children in the classroom at The Matheny School.

What really impressed Friedman, who earned a degree in therapeutic recreation from Ithaca College in May 2011, were the interdisciplinary teams of therapists. “In the classroom,” she says, “I would be working directly with occupational therapists, speech therapists and physical therapists.”

Throughout her college years, Friedman had done fieldwork, but it was mostly with recovering stroke victims. This was her first experience working with a young population and with people whose disabilities had been with them from birth.

“My first day at Matheny,” she recalls, “some of the adults immediately struck up a conversation with me. They were asking questions about me and school and everything. I was the shy one.” So fulfilling was her experience that had there been an full-time opening available at the end of the internship, “I’d have done it in a heartbeat. It’s just a great place.” She remembers a moment during her internship when, one of the kids looked at her and grabbing her hand said, “I’m really glad you’re here. You’re my best friend.” It doesn’t get much better than that.

After caring for her son, who has type 1 diabetes, Hsiao-lin “Pearl” Chiang knew her true calling was to become a nurse (so much for her Master’s degree in computer science).

Chiang, a resident of Bridgewater, N.J., started her nursing career at Muhlenberg Hospital in Plainfield, moved on to the Bonnie Brae School in Basking Ridge and then joined the nursing staff at Matheny in 2006.

But it’s not just nursing that tugs at her heart: she has always loved to paint. “One of my friends, who has a lot of galleries in Taiwan, saw my paintings and offered me a big show at the Art Yards Café in Taipei,” she says. The exhibit, containing 38 paintings, was held from August 7-October 5 of this year, and Chiang was there for the premiere. Many of her paintings, such as “Mermaid” (below), “Japanese Beauty” and “Diamond Beauty,” depict beautiful women.

Her technique is to start with a pencil sketch, followed by a watercolor pencil. She then adds some other material like oil paint or a special effect such as embroidery or a pearl “to make it come to life. Painting helps me show my feelings directly.”

Full Circle 2011 Dimensions, the annual celebration of the Matheny’s Arts Access Program, highlighted the many dimensions of the program’s artists. “They may be painters,” noted Eileen Murray, the program’s director. “They may be playwrights; they may be dancers or choreographers. Arts Access gives them the opportunity to sample all that and to find their passion.”

Arts Access enables people with disabilities to create fine art, assisted by professional artist-facilitators. At Full Circle 2011, held Saturday, November 5, 42 pieces of visual art were exhibited during a reception in the gallery. In addition, a stage presentation  showcased dance, drama and poetry. Professional dancers and actors, and some Arts Access staff members, performed with the Arts Access artists.

During the gallery reception, food tasting stations were donated by Ciao, Basking Ridge; cocoLuxe Fine Pastries, Peapack; Due Terre Enoteca, Bernardsville; Gladstone Tavern, Gladstone; 3 West Restaurant, Basking Ridge; and Village Office Supply, Somerset.

Speaking to a packed theater prior to the stage presentation, Steve Proctor, Matheny president, pointed out that Matheny patients often have great difficulty communicating, but, “Arts Access provides them with an opportunity for creative expression.” It reflects, he added, Matheny’s efforts, “to enrich their entire lives, to provide them with a full spectrum of life experiences.”

Pamela Cembrook, a resident of Bernardsville and Matheny trustee, was honorary chair of the event. Artist Dan Fenelon was curator of the visual arts exhibit.

Above, actress Alexandra Hellquist reads “My Pakistani Princess,” written by Mike Cornely, right.

Below, “Group Home” by Ellen Kane.