Shari Bender of Dix Hills believes that there is always something new on the horizon, both in her own life as well as in the advancement for a cure for hemophilia— a disease that her daughter, Rose, was diagnosed with when she was 9 months old. Besides being an advocate for hemophilia research, Shari is a stand-up comedian in her spare time. She not only is a graduate of Stanford University but was the valedictorian of McGuire’s Long Island College of Comedy and has performed in many local venues.
Shari began her journey to help those with hemophilia when she received Rose’s diagnosis after taking her to the hospital for a knee bleed. After first being misdiagnosed with von Willebrand disease, a blood disorder that affects females, the true diagnosis was much worse. Rose has the rarest and most severe type of hemophilia. According to Shari, Rose is one of only 12 females in the U.S. with hemophilia A.
“When Rose was diagnosed, I fell apart,” she says. “Our lives were turned upside down. She was at death’s door. It was a terrible cascade of events.”
Hemophilia almost exclusively affects males, and like most disorders, has varying degrees of severity. A hemophiliac’s blood fails to clot, and an injury can result in uncontrollable bleeding. Contrary to popular belief, people with hemophilia don’t bleed to death from a small cut, nor do they bleed faster. Instead, they bleed for a much longer time.
Those with hemophilia must always be cognizant of falling or getting bruised, as their muscles and organs can also bleed, and this awareness can limit how children spend their time and physical contact can be very restricted.
The Benders wanted to find out everything they could to help Rose, so they reached out to the National Hemophilia Foundation (NHF) and to the LI Blood Center for assistance.
“I felt so grateful to the people who donated their blood and plasma,” she says. “Hundreds of strangers who had never met me—and I’ll never know—helped Rose.”
Shari wanted to give back to the community of donors who so selflessly help others by giving blood.
“I had a blood drive/first birthday party for Rose,” she says. The party included pizza and balloons, and was a huge success. “The Rose Bender Birthday Drive got about 100 pints a year,” she says proudly of the event.
For 13 years Shari was active with the LI Blood Center, including speaking at schools, hospitals and blood drives across Long Island about the benefits of donating blood.
“It was a one-woman operation, and I can say with a full heart that I made a difference,” she says.
After Rose celebrated her Bat Mitzvah, Shari felt it was the right time for both of them to begin a new phase in their lives.
“We brought Rose up to be open about her condition,” her mother says today. “I involved her in the process, and she feels an obligation to help others, and so do Steven and I.”
Their way of giving back was to immerse themselves in the NHF and begin fund raising for a cure. Scientists consider hemophilia a good test for gene-therapy because it’s caused by only one defective gene. In 10 years, the Benders have helped raise more than $1 million for gene-therapy research.
Shari has taken the lead to raise more awareness and funds for women affected by bleeding disorders. In 2008, Shari and Melissa Penn co-founded the New York City Hemophilia Chapter (NYCHC) to address the needs of the hemophiliac community on Long Island, Staten Island, Westchester, Queens and Brooklyn. The chapter supports research and education initiatives, sponsors family-oriented special events and assists with helping the families communicate with each other, as well as with medical personnel, and when appropriate, government offices. As president of the NYCHC, Shari was instrumental in creating their First Step Program for newly diagnosed families and was also part of the inception of Project Red Flag, a program for women with bleeding disorders.
Shari’s newest initiative was launched in November. Her chapter has joined with the NHF in the Victory for Women with Blood Disorders program to bring awareness and support for women already diagnosed with a blood disorder and those not yet diagnosed. As part of the program, Shari worked with New York fashion designer Dana-Maxx Pomerantz on the exclusive Victory for Women Dress. A portion of the proceeds from the sale of each dress will benefit Victory for Women.
Living with hemophilia can be frightening at times, Shari says. She is proud of the way Rose handles what comes her way with aplomb, including infusing herself with medication to clot her blood immediately when necessary. But hemophilia is a very expensive disorder to treat. Shari estimates that Rose’s medication costs about $4,000 per week, if everything is going perfectly, meaning she gets no bumps or bruises. The costs can soar as high as $10,000 per week otherwise. For some hemophiliacs treatment can reach the million-dollar mark by their middle school years.
“It’s the internal bleeding that you have to be vigilant about,” Shari says.
Something as innocuous as a simple game can have scary consequences. Rose was recently playing with her brother, Joe, 9. She tossed a grape in the air and tried to catch it with her mouth. It missed her mouth and landed on her eye.
Shari said they immediately knew that something was wrong because Rose’s pupil became as small as a speck. Her daughter had to infuse herself to stop the internal bleeding behind her eye.
Rose will face many challenges during her lifetime, but the outlook for hemophiliacs is brighter today than ever before.
“I am very optimistic about my daughter’s future,” Shari says. Her family’s commitment as active supporters of hemophiliacs and others with blood disorders has had a significant impact throughout the community.
“One thing I have learned is that one person can make a difference,” she says. “I was a Long Island housewife who got 1,000 pints of blood donated. I am not a super woman. I decided to make a difference. Everyone can do something.”
If you know a super woman who deserves good Fortune—and a profile—e-mail your nominations to Beverly at firstname.lastname@example.org.