Daughter Inspires Dad’s Quest for Cure

Dreaming With Dakota: After Dakota Bihn (pictured in pink in this 2007 photo with her family) was diagnosed with Juvenile Tay-Sachs, her father launched the Cure Tay-Sachs Foundation.
COURTESY OF KEN BIHN
Dreaming With Dakota: After Dakota Bihn (pictured in pink in this 2007 photo with her family) was diagnosed with Juvenile Tay-Sachs, her father launched the Cure Tay-Sachs Foundation.

By Joy Resmovits

Published August 19, 2009, issue of August 28, 2009.
  • Print
  • Share Share

Dakota Jean Bihn started dropping things at age 3.

That’s how Ohio accountant Ken Bihn begins telling the story of his daughter, a tale that has led him down the unexpected path of starting his own foundation.

Dakota spent years bouncing between puzzled doctors. “She was clumsy, then she stuttered a little bit,” Bihn said. By September 2005, after Dakota fell behind even in special education school, a friend referred Bihn to a doctor known for solving medical mysteries.

The doctor interviewed Dakota and her family, drew blood and called Bihn into his office two weeks later.

“He had a tear running down his cheek when he slipped a piece of paper across the table to me that said she had Tay-Sachs,” Bihn said. “The only question I thought to ask was, ‘Will she live to be 30?’ He just shook his head, ‘No way.’”

Following a couple weeks of crying, he embarked on what would become his life’s pursuit: fighting for resources to treat a rare disease. After sending letters to Oprah Winfrey, Bill Gates and the usual suspects, Bihn began to realize, “You can’t just wait for someone to write you a check.”

So he started the Cure Tay-Sachs Foundation. Binh, who lives with his family in a suburb of Cleveland, incorporated the foundation in June 2007, and so far it has raised more than $921,000, much of it from donations of as little as $20. Fundraising techniques have run the gamut from an “adopt a mouse” program to fund research to T-shirt sales to an upcoming “ultimate sports auction,” which will feature Cleveland Brown Eric Steinbach. The group funnels the money to research projects, including $325,000 to the National Tay-Sachs and Allied Diseases Association’s research initiative, making Cure Tay-Sachs the initiative’s largest single donor over the past two years.

“Ken has been a great inspiration for all our families to get involved, really showing how one person can make a difference,” said Susan Kahn, director of the National Tay-Sachs and Allied Diseases Association. “He’s always pushing us, pushing everybody to have more ambitious goals.”

Until 2005, however, Bihn had never heard of Tay-Sachs. He said that although Irish-Americans, such as himself, have a carrier probability of one in 50, members of his ethnic group are less aware than Jews are of the disease. (Ashkenazic Jews have a carrier rate of one in 27.) When parents are both Tay-Sachs carriers, their child has a 1-in-4 chance of inheriting two copies of the mutated gene and having the disease.

Tay-Sachs results from a genetic mutation that prevents a vital enzyme, known as Hex A, from cleaning dysfunctional lipids from the brain. The cell buildup progressively wreaks havoc. The rare disease is notorious for being fatal to infants by the time they turn 3. Late-Onset Tay-Sachs and Juvenile Tay-Sachs — the variety Dakota has — are different forms of the disease in which the mutation does its damage at a slower pace.

Dakota can still walk, smile and throw kisses to those who love her. Though she is losing muscle functionality, Bihn says she still has the power to lift the spirits of others and inspire many to contribute to Cure Tay-Sachs. The foundation’s Web site features a video called “Dakota’s Dream,” one piece of a larger strategy to spread the word.

Dakota, now 10, received a cord blood transplant in 2007 at Duke University. Though the blood she received was rich in Hex A, the transfusion did not work. Dakota was weakened by the hospital visit. Yet despite some changes, Bihn said her “essential sweetness” is still there.

“I have to keep fighting, even if I lose Dakota,” Bihn said. “Someone has to draw a line in the sand and say, ‘I’ll fight until the fight’s over.’”


The Jewish Daily Forward welcomes reader comments in order to promote thoughtful discussion on issues of importance to the Jewish community. In the interest of maintaining a civil forum, The Jewish Daily Forwardrequires that all commenters be appropriately respectful toward our writers, other commenters and the subjects of the articles. Vigorous debate and reasoned critique are welcome; name-calling and personal invective are not. While we generally do not seek to edit or actively moderate comments, our spam filter prevents most links and certain key words from being posted and The Jewish Daily Forward reserves the right to remove comments for any reason.





Find us on Facebook!
  • This is what the rockets over Israel and Gaza look like from space:
  • "Israel should not let captives languish or corpses rot. It should do everything in its power to recover people and bodies. Jewish law places a premium on pidyon shvuyim, “the redemption of captives,” and proper burial. But not when the price will lead to more death and more kidnappings." Do you agree?
  • Slate.com's Allison Benedikt wrote that Taglit-Birthright Israel is partly to blame for the death of American IDF volunteer Max Steinberg. This is why she's wrong:
  • Israeli soldiers want you to buy them socks. And snacks. And backpacks. And underwear. And pizza. So claim dozens of fundraising campaigns launched by American Jewish and Israeli charities since the start of the current wave of crisis and conflict in Israel and Gaza.
  • The sign reads: “Dogs are allowed in this establishment but Zionists are not under any circumstances.”
  • Is Twitter Israel's new worst enemy?
  • More than 50 former Israeli soldiers have refused to serve in the current ground operation in #Gaza.
  • "My wife and I are both half-Jewish. Both of us very much felt and feel American first and Jewish second. We are currently debating whether we should send our daughter to a Jewish pre-K and kindergarten program or to a public one. Pros? Give her a Jewish community and identity that she could build on throughout her life. Cons? Costs a lot of money; She will enter school with the idea that being Jewish makes her different somehow instead of something that you do after or in addition to regular school. Maybe a Shabbat sing-along would be enough?"
  • Undeterred by the conflict, 24 Jews participated in the first ever Jewish National Fund— JDate singles trip to Israel. Translation: Jews age 30 to 45 travelled to Israel to get it on in the sun, with a side of hummus.
  • "It pains and shocks me to say this, but here goes: My father was right all along. He always told me, as I spouted liberal talking points at the Shabbos table and challenged his hawkish views on Israel and the Palestinians to his unending chagrin, that I would one day change my tune." Have you had a similar experience?
  • "'What’s this, mommy?' she asked, while pulling at the purple sleeve to unwrap this mysterious little gift mom keeps hidden in the inside pocket of her bag. Oh boy, how do I answer?"
  • "I fear that we are witnessing the end of politics in the Israeli-Palestinian conflict. I see no possibility for resolution right now. I look into the future and see only a void." What do you think?
  • Not a gazillionaire? Take the "poor door."
  • "We will do what we must to protect our people. We have that right. We are not less deserving of life and quiet than anyone else. No more apologies."
  • "Woody Allen should have quit while he was ahead." Ezra Glinter's review of "Magic in the Moonlight": http://jd.fo/f4Q1Q
  • from-cache

Would you like to receive updates about new stories?




















We will not share your e-mail address or other personal information.

Already subscribed? Manage your subscription.