Spina Bifida Walk organized by students

(Middletown) - SUNY Orange students are seeking participants, donors and sponsors for the College’s first Spina Bifida Walk, scheduled from 9 to 11 a.m. Sunday, Feb. 4 at Middletown ’s Galleria at Crystal Run, with all proceeds from the event to be earmarked specifically for spina bifida research.

Community members may support the event in three ways, by participating as a walker, sponsoring a walker who has already registered or offering a donation to the committee. Prizes will be awarded to those who raise the most money, and early registrants will receive a free, blue, latex-free wristband (many people afflicted with spina bifida suffer from latex allergies) with the Spina Bifida Association logo. Participants may register in advance. Registration will also be held the morning of the event, beginning at 8 a.m. in the mall’s center court.
During the walk, representatives from the student-led organizing committee will be available to answer questions, accept donations and provide information about spina bifida, its lifelong effects and new cutting-edge research methods.
SUNY Orange students Sarah Marley, Shilpa Patel and Katie Horsham have been stockpiling volunteers and organizing this event for the past two months. They have received assistance from the national Spina Bifida Association as well as the Spina Bifida Association’s chapter in Rochester, N.Y. , the closest New York State SBA chapter to Orange County. Volunteers will be blanketing the area with posters, flyers and information sheets in the next few weeks to encourage participation from the community.

“There is no local walk for spina bifida, to the best of my knowledge,” said Patel, who is afflicted with spina bifida and is confined to a wheelchair. “I’ve wanted to organize a walk of this type since 2001, because it’s important to raise awareness, but also to raise money to help researchers find a cure.”

“We feel that any amount of money we raise will make a difference,” Marley added. “We’ve already gotten support from places like Orange Regional Medical Center and the Family Empowerment Council, and several stores in the mall were very generous in providing gifts that we can present to the people who raise the most money.”

An estimated 70,000 people in the United States are currently living with spina bifida, the most common permanently disabling birth defect. Spina bifida is a neural tube defect that occurs in the first month of pregnancy when the spinal column doesn’t close completely. A herniaiton of the spinal cord protrudes from the spinal column and can lead to paralysis below the area of the herniation.
There are 60 million women at risk of having a baby born with spina bifida. On average, eight babies every day are affected by spina bifida or a similar birth defect of the brain and spine. Each year, about 3,000 pregnancies are affected by these birth defects.
The effects of spina bifida are different for every person. Up to 90 percent of children with the worst form of spina bifida have hydrocephalus (fluid on the brain) and must have surgery to insert a “shunt” that helps drain the fluid-the shunt stays in place for the lifetime of the person. Other conditions include full or partial paralysis, bladder and bowel control difficulties, learning disabilities, depression, latex allergy, and social and sexual issues.

Thanks to new medical treatments and technology, most people born with spina bifida can expect to live a normal life.
The standard treatment of spina bifida has been to perform surgery on the newborn within the first 24 to 48 hours after birth. However, experimental new surgeries, performed in utero after spina bifida has been detected, have increased the chance for fetuses to develop normally.

“We hope to raise money to further this incredible research that has the potential to give children affected with spina bifida the quality of life they so fully deserve,” Marley said.
Among those stores and organizations that have already stepped forward to support the students’ efforts are Merle Norman Cosmetics (60-minute pamper session), Sweet Feelings Jewelers (cubic zirconium diamond pendent necklace), Gertrude Hawk ($25 gift card), Hallmark ($20 gift card), Family Empowerment Council of Orange/Sullivan County ($200) and Orange Regional Medical Center ($500).
To donate, register or seek additional information, contact Marley at (845) 224-5262. To download a registration form, visit the SUNY Orange web site at www.sunyorange.edu.