June 28, 2006
Rallying For Stem Cell Research
A Woman's Quest For A Cure
Step inside Kim Haeg's Southold home and be greeted by a smile as bright and warm as a ray of summer sunshine.
Kim, who turned 21 on June 14, has seen her share of dark days. After a devastating car accident in Mattituck left her a quadriplegic dependent upon a ventilator two years ago, the road has been long for Kim and her mother Lorraine, who've been faced with seemingly overwhelming obstacles ranging from insurance hurdles to difficulties finding adequate nursing care.
These days, Kim has a reason to smile. She's brimming with optimism about new advances in stem cell research that could open the doors to a whole new future.
"Thank God it will happen while I'm still young," she said.
Recently, Haeg and her mother were invited by Anthony Testaverde, founder of the Testaverde Fund for Spinal Cord Injury, Inc., to attend a Rally for the Cure in New York City.
Rally for the Cure, said Haeg, is an annual event headed by Dr. Wise Young, a Rutgers University physician at the forefront of spinal cord research. At the event, Kim met Young, and New York State Senate candidate Brooke Ellison, a quadriplegic who, like Kim, is on a ventilator and was only 11 when she was hit by a car on her way home from school.
Meeting such inspirations left Kim praying for a miracle of her own: "It was very exciting."
And, with clinical human trials in stem cell research set to begin in China in March of 2007, that miracle might not be so far off. Kim said Young has told her that she "is a candidate" for the research.
But for the dream to become a reality, money is needed. The purpose of Rally for the Cure is to raise funds for spinal cord research.
"Our goal is to empower people and families with spinal cord injuries to do something rather than just sitting and waiting," said Young.
Young said little is happening in the United States. But if clinical trials prove that therapy is effective and safe, the Food and Drug Administration will approve new therapies for clinical use.
Spinal cord research has been in the news recently. A study appeared in the March 29 issue of The Journal of Neuroscience indicating that stem cells can repair damaged spinal tissue and help restore function in rats with spinal cord injuries, according to research done by Michael Fehlings, M.D., Ph.D, and his colleagues at the Krembil Neuroscience Center at the Toronto Western Research Center and the University of Toronto. The findings suggest results that might eventually lead to new treatments for humans with spinal cord injuries.
According to Young, the Pharmaceutical Manufacturing Association of America estimates that the average cost for moving a therapy from discovery to market is over $800 million. There are over 250,000 individuals with spinal cord injuries in the United States.
"If every family raised just $1000 a year, they could raise $250 million a year," said Lorraine. "That's more than double the total amount of research funding in the field."
Private fundraising is necessary, said Young; in the past five years, federal funding of spinal cord injury research has remained at $89 million with the President's 2007 budget proposing to cut funds to $87 million.
Lorraine credits Anthony Testaverde. Testaverde formed his Wantagh-based organization after his son, Joe, was paralyzed in a diving accident in 2000 — with sparking hope in her daughter's eyes. Testaverde helped Kim to secure a voice-generated computer and other cutting-edge technology.
In addition, Testaverde has given Kim a seat on the board. Kim's set to embark upon a new chapter in her life, encouraging those who are in the same situation. "My job is to help paralyzed people and cheer them up," she said. "I call them and get them out of the slump they're in. You've got to look up and realize there's hope."
Testaverde believes Kim's an inspiration. "Kim's such a bubbly little spirit. I want her to give others hope and let them know there's going to be a cure someday." Speaking of Kim, his voice is warm: "She's my little girl. I love her."
Lorraine, who has been her daughter's champion since the fateful night of her accident, working tirelessly to ensure Kim's welfare and crusade for her care, said she will stand strong and push so that her daughter may one day be one of the first human clinical trials in China.
If Kim is chosen, another fundraiser may be necessary; costs to transport Kim to China would total around $30,000. But Lorraine refuses to give up. "We have to spread the word," she said. "Kim will walk in her lifetime."
For more information or to donate to spinal cord research, go to carecure.org. Donations for Kim Haeg can be sent to Friends of Kim Haeg at any Suffolk County National Bank.