Shelbie Oppenheimer of New Hope, who was diagnosed with the disease in 1996, was scheduled to receive the Hope and Courage Award Tuesday from the Greater Philadelphia Chapter of the ALS Association.
By: Linda Seida
NEW HOPE Approximately every 90 minutes in the United States, someone is diagnosed with the fatal neurological condition ALS, and every 90 minutes someone also dies from it.
ALS amyotrophic lateral sclerosis also is known as Lou Gehrig’s disease for the New York Yankees ballplayer who succumbed to it in 1941. After his diagnosis, the first baseman said, "I might have had a tough break, but I have an awful lot to live for."
Although Mr. Gehrig spoke those words more than 60 years ago, they could have been uttered today by Shelbie Oppenheimer of New Hope, who was diagnosed with ALS in 1996 at the age of 30. Although the disease has made it difficult for her to speak, she works tirelessly and publicly to give voice to the patients who cannot speak for themselves.
"Shelbie was diagnosed at a very young age," said Ellyn Phillips, president of the Greater Philadelphia Chapter of the ALS Association. "She could have crawled into a hole and become a recluse. Instead, she went public, testifying at an FDA hearing, saying that she wanted to live to dance at her daughter’s wedding. She has spoken many times to members of the Phillies Wives, a charitable organization made up of the baseball team’s spouses and staff, and the Phillies team. They look at this beautiful young woman and realize that she is their age. That ALS could happen to them."
Ms. Oppenheimer was one of three recipients of the Hope and Courage Award scheduled to be at the chapter’s annual luncheon Tuesday and introduced by former Congressman James Greenwood. Also scheduled to be honored were Mariah Gladis, a psychotherapist who has lived with ALS for 25 years, and Kevin Glenn, an ALS patient for nine years.
"I feel honored to share this award with Mariah and Kevin on behalf of the 800 patients in the Delaware Valley, many of whom exhibit a special kind of courage on a daily basis without any kind of recognition," Ms. Oppenheimer said prior to the luncheon. "I feel as though I am accepting this award on their behalf. Ours is a unique struggle."
ALS was first identified in 1869. Symptoms include the paralysis or wasting of the muscles of the limbs and trunk as well as those that control speech, swallowing and respiration. Approximately 5,600 new cases are diagnosed in the United States each year. Estimates say ALS is responsible for one out of every 100,000 deaths in people over the age of 20, according to the ALS Association.
Since her diagnosis, Ms. Oppenheimer has become an active advocate for ALS patients, testifying before the FDA and Congress, and she was with President Bill Clinton when he signed the FDA Modernization Act, which allows for expediting the review process for new drugs to treat fatal diseases such as ALS.
She also serves on the board of the Philadelphia chapter.
The average life expectancy after diagnosis is two to five years with more than half of patients living more than three years after diagnosis. Ms. Oppenheimer has fought the disease for nine years. Because speaking has become difficult, she participated in an interview via e-mail.
In 1998, Ms. Oppenheimer and her husband, Jeff, traveled to Guatemala to adopt their daughter, Isabel. Today Isabel helps her mom put on earrings. She also helps her mom put on makeup.
"Our routine is similar to most families, but my arms and legs are those of my caregiver, Erika, or my husband, Jeff," Ms. Oppenheimer said.
"Every family handles the disease differently," Ms. Phillips said. "I’ve seen spouses leave their jobs to care for their loved one, I’ve seen spouses leave the person with ALS. Jeff, however, is as remarkable as Shelbie. He tells me that Shelbie is a saint. I think that they both are."
The couple moved to the region in 1995. Ms. Oppenheimer, a native of Columbus, Ohio, earned a degree in early childhood education from Ohio State and went on to become the director of the Maple Leaf Learning Center in Newtown, Pa., before stepping down to become an advocate for people with ALS. She has been featured on CNN and NBC Dateline and in Business Week and USA Today.
She intends to continue to speak out on behalf of others with ALS while holding on to hope for a cure.
"I feel it’s important to be a role model for my daughter," she said. "Just because you’re diagnosed with a serious illness, that shouldn’t define your life. I try to live my life as I would if I were healthy, and in an odd way, having ALS has given me a platform to help others far more than I probably could have if I could walk and care for myself.
"Obviously I hope there will be a treatment or cure in my lifetime. But aside from that, I hope that my family and friends are happy and healthy, and I can continue to play a role in ending the suffering associated with this merciless disease."
According to the ALS Association, ALS is not a rare disease and occurs worldwide with no racial, ethnic or socioeconomic boundaries. ALS can strike anyone, and projections state that of the U.S. population today, 300,000 will die from ALS.
"We do not have effective treatments or a cure for ALS," Ms. Phillips said. "We need more dollars for research and patient care. Please give generously. Your money will be spent wisely to help Shelbie and our families with ALS."
According to the Philadelphia chapter, 84 cents of each dollar raised by the chapter is devoted to patient services, programs and research. The chapter receives no government funding and last year achieved a record $4 million in revenue.
The chapter was founded in 1977. Since 1984, it has been the principal charity of the Philadelphia Phillies.
"I think it’s important to know that ALS does not discriminate it affects healthy people of all races, tax brackets, age, gender, etc.," Ms. Oppenheimer said. "I think it’s important that people realize that our cognitive abilities remain the same while our bodies lose functionality. It’s a more common disease than most people realize; it’s just there are not many people living with it at one time because the progression is typically very fast."
Visit www.alsphiladelphia.org for more information or to make a donation.