The Cure Tay-Sachs Foundation - Board of Directors

Cheryl Babo was born in Youngstown, Ohio, but has spent most of her adult life in Phoenix, Arizona. Cheryl and her husband, Keith, are the parents of two children — Ryan Anthony Babo, who was born on February 19, 2002, and Regan Audrey Babo, who was born on March 9, 2005.

Cheryl's son Ryan was diagnosed with juvenile onset Tay-Sachs disease in March 2005, at the age of 3 years old. Two months later, Ryan received a cord blood transplant at University Medical Center in Tucson, Arizona. Ryan died as a result of transplant complications four months later on August 30, 2005.

Cheryl attended Arizona State University, where she obtained her undergraduate degree (B.A., Philosophy 1990), law degree (J.D. 1993), and joint business administration and information management degrees (M.B.A./M.S.I.M. 2001). She spent the first part of her legal career as a commercial litigation attorney, focusing primarily in the area of complex civil actions.

After her son's diagnosis and death, Cheryl changed her career focus and now practices exclusively in the area of life sciences law. She currently is employed as Assistant Counsel for The Translational Genomics Research Institute (TGen) in Phoenix, Arizona and Of Counsel for Life Sciences Law, PLLC in Chapel Hill, North Carolina.

Born (1941) and raised in Cleveland Ohio, graduated St. Ignatius H.S. 1959 and Griswold Institute 1963 with degree in electronics. In 1961 while still in school I worked at the Erie Railroad where I met Jean Murphy. We were married in Oct. 1963 and blessed with three children, Ken, Sue and Tim and now have seven grandchildren, Bailey, Dakota, Corey, Colin, Fiona, Maeve, Kaleb.

From 1963 until 1975 I worked at three companies. I held positions from electronic technician, purchasing department buyer for electronic components, sales order correspondent and inside Sales Manager. In 1975 a partner and myself started a Manufactures Sales Representative Company selling electronic test equipment and various electronic components. Working with the automotive companies I sold a number of custom diagnostic testers for servicing the electronic controls being added to automobiles and trucks. In the mid 1980’s I bought out my partner and in the early 90’s sold the rep company to two of my employees. In 1976 while still operating the Rep Co. I started a manufacturing company to build test equipment for the transportation industry and so Nu-Di as an electronics company was born. In June of 2000 Ken and Tim purchased Nu-Di and hired me to run the Naples Florida office. Today’s job is to work with Ken & Julie to find the cure for Tay-Sachs disease.

Julie Bihn is wife to Ken Bihn, and Mom to Dakota, age 8 who has Juvenile Onset Tay-Sachs and Bailey, age 10, who is a carrier. Julie is a stay-at-home mom who loves to be involved in her daughters' schools, sports, and therapies. Julie holds a degree in elementary education and was a substitute teacher, preschool teacher and summer school teacher before staying home with her two daughters. She has been actively involved in PTA and her daughters' schools for years.

Julie is excited to take part in finding a cure for the horrible disease that has affected all aspects of her family's life. She looks forward to using her talents and experiences with PTA fundraising events to help raise money for a cure. Julie is confident that with dedication and hard work, we can fund the research to find a cure for Tay-Sachs disease.

Born (1964) and raised in Cleveland, Ohio, graduated from Miami University in Oxford, Ohio in 1986 with an accounting degree. Over the years Ken has worked for Ernst & Young, Figgie International, TRINOVA and Aeroquip-Inoac in capacities ranging from public accountant, operation analyst, controller, and production manager. In June 2000 Ken and his brother purchased Nu-Di Corporation and he became President and co-owner. Since that time the company has nearly tripled in size and is now a world class manufacturer of service use test equipment for the transportation industry.

Ken was married to his wife Julie in September 1993 and has two daughters - Bailey born in October 1996 and Dakota born in May 1999. In September 2005 Dakota was diagnosed with Juvenile On-Set Tay-Sachs disease and since that date Ken has set his sights on defeating this disease. Dakota had a cord blood transplant at Duke Medical Center in January 2006 and Ken and his family started the Cure Tay-Sachs Foundation in June 2007.

Tim was born the youngest of three to Bob and Jean Bihn (brother Ken & sister Sue (Mitchell)). Raised in Cleveland, Tim attended BGSU in Ohio and graduated with a business degree in 1991. After graduation, began fulltime employment with Nu-Di Corporation. In 2000, become Vice President and co-owner of Nu-Di

Tim and his wife Erin meet at Nu-Di in 1997 and now are blessed with three children – Fiona (born in July ’02), Maeve (born in May ’04) and Kaleb (born in June ’05). In 2005, Tim was honored with being the godfather to Dakota & Bailey Bihn.

Bill lives in Fairview Park, Ohio with his wife Mary Kay and their sons Spencer and Michael. Bill is a 1981 graduate of St. Ignatius High School in Cleveland. He graduated from Miami University in 1985 and the Case Western Reserve University School of Law in 1988.

Bill grew up on the same street as other CTSF Board members, Ken Bihn, Tim Bihn, Sue Mitchell, Scott Metzger and Mike Weisbarth. Bill also worked at the Nu-Di Products Co. during summer vacations from college. For the past ten (10) years, Bill has been practicing law as President of Wm. L. Costello Co. L.P.A. His law practice is concentrated in the areas of Creditor's Rights and Corporations. The Nu-Di Products Company and the CTSF are two of his two favorite clients.

Desiree is a proud mother of two boys, Brenden and Conner. Conner was diagnosed with infantile Tay-Sachs at the age of 7 ½ months and passed away shortly before his second birthday. Soon after Conner’s diagnosis, Desiree became quite active within the NTSAD and currently holds a position on the board. She also formed the Conner's Way Foundation in honor of her son to expand education and carrier screening practices for Tay-Sachs disease.

Additionally, as a nurse specializing in pediatrics, Desiree has had experience with pediatric bone marrow transplantation, various genetic disorders, and all aspects of pediatric critical care.

Desiree has been involved in public speaking on Tay-Sachs disease and pediatric hospice and palliative care involvement. Through the Cure Tay-Sachs Foundation, Desiree is focused on community education for Tay-Sachs and the funding of promising therapies which will ultimately lead to a cure.

Bridget is mother to Molly Grace Jordan- a 5 year old Tay-Sachs child. Bridget and her husband, Mark, live in Kentucky. Mark is self employed making artificial concrete stone for residential uses. They have two other children, Hannah (14) who enjoys basketball, and Kristen (10) who loves cheerleading.

Bridget is a stay at home mom and is also currently going to school to obtain a communications disorders degree and wishes to become a speech pathologist. She has learned so much from caring for Molly and wants to share her love and compassion with other children. She is a talented crafter who makes Molly Grace Hair Bows which she sells on her own eBay store. The proceeds from this online store benefit the Cure Tay-Sachs Foundation. She is also active at her church, Candle Ridge Baptist, volunteering her time to sew costumes for plays and helping at choir events. Bridget is passionate about finding a cure for Tay-Sachs disease.

Rick Karl (right) is one of two proud fathers of Krystie Anna Karl-Steiger. Krystie was born on January 26th, 2006 (and was a great birthday gift for her Dad who shares that same date). Krystie was diagnosed with Tay Sachs disease just before her first birthday.

Rick and family are currently living in Minneapolis, where Krystie has received a cord blood stem cell transplant in hopes of halting the disease. They hope to return to their home in California sometime in December, 2007. Krystie is doing relatively well, and is in the midst of some very significant post-transplant rehabilitative therapy.

Rick is an IT sales consultant with the Teradata division of the NCR Corporation, and has spent most of his career in manufacturing management. He works with Fortune 500 firms to help them understand and manage the large amount of data that resides throughout any large organization.

More information on the Karl-Steiger family and on Krystie is available at www.caringbridge.org/visit/krystie

Nichole Markowich was married to husband Craig in May of 2000. She has two daughters Brianne (January 1995) and Alexis (March 2001). Alexis was diagnosised with Juvenile onset Tay-Sachs in August of 2005. Lexi had a cord blood transplant at Duke University Medical Center in December of 2005. Losing her battle to an infection in her blood in September of 2006.

Nichole has an Associates Degree in Business Management and is currently attending school again pursuing a degree in nursing. After caring for her daughter, she now has a passion to help others. She is dedicated to finding a cure to prevent future loss to other families.

Scott began his career with Bank of America in 1981 and worked on mergers and acquisitions before joining Prudential Securities, a predecessor firm of Wells Fargo Advisors in 1992. Originally from Ohio, Scott has lived in the Fort Myers area since 1980. He earned his banking degree from the University of Florida in 1987. Scott was promoted to Senior Vice President - Investment Officer in 2005. In 2007 Scott became Board Certified in Estate Planning. Scott is very involved in his local community and charitable activities. He is a member of the Bishop Verot Catholic High School Board and is on the Board of Directors of the Cure Tay-Sachs Foundation. Scott currently lives in Fort Myers area with his wife of 25 years Diana, and their three daughters Jordyn, Taylor and Madison.

Sue (Bihn) Mitchell was born and raised in the Cleveland area with brothers Ken and Tim. She currently lives in Dublin, OH with her husband Robb Mitchell and her sons Corey and Colin. Sue is a graduate of Magnificat High School and Bowling Green State University. After graduation, she moved from Cleveland to Columbus and started working as a computer programmer for the Ohio Bureau of Workers’ Compensation. She is still currently employed by BWC, and enjoys her position as a part-time Systems Analyst. Sue enjoys spending time with her family and loves to watch the boys participate in their sporting events. Sue enjoys walking, golfing, and riding her bike. She has participated in many organized fund-raising walking and riding events over the years. Sue enjoys watching the Indians and the Browns, while her husband enjoys the Reds and the Bengals, but the whole family agrees on the Ohio State Buckeye’s. Sue has loved the honor of being the Godmother to Bailey, Dakota and Maeve Bihn.

Tim is father to Elise Ryne Rochman – 3 ½ year old with Tay-Sachs. Tim and his wife Kerri currently live outside St. Louis, Missouri. Kerri is a Captain in the United States Air Force. They have one other child, Eden (2) who loves to read, swim, and shower her sister with kisses.

Tim was previously employed by the United States Coast Guard and has a Bachelors degree in recreation from Southern Illinois University. As a stay-at-home dad, he keeps busy entertaining his girls and getting them out for their daily jogs (rain or shine). He also promotes Tay-Sachs awareness by sponsoring local softball and kickball teams as well as helping organize an annual benefit concert in his daughter’s honor.

Mike was born in Cleveland and is one of six children. He became a fourth, live-in child in the Bihn home when they moved into the same North Olmsted neighborhood. Mike attended grade school with Ken then went on to a competing high school and college, but always remained a close friend to Ken and the Bihn family. After graduating in 1986 from BGSU in Ohio with a degree in accounting, Mike joined Touche Ross, a public accounting firm. Since 1994, Mike has served in various accounting and finance capacities with Cole National Corp., OfficeMax Inc., LESCO, Inc. and currently as Controller with Edgepark Medical Supplies.

Eventually, Mike and Ken placed their competitive edge aside and exchanged roles as the best man in each other’s wedding. Mike married his wife Kathy in 1988. They have three daughters; Jamie – 17, Madison – 14 and McKenna – 12. Mike and Kathy spend a lot of time traveling with their girls’ athletic events and coordinating team activities. Mike is an active manager and player of a men’s hockey team and the Treasurer of the Brecksville/Broadview Heights High School Boosters. Mike plays softball and enjoys fishing and golfing.