Research into finding the cause and cure of diseases has always been a rocky road and necessary funding is difficult to secure. Progress is typically slow and incremental, and promising leads often end up going nowhere.

Behind every breakthrough discovery is one or more brilliant, persistent scientists with a brave heart and tireless work ethic – people like Marcy Carlson Speer. Marcy Carlson Speer lived too short a time, but she gave so much to the things she cared about. Her contributions as a Duke University scientist dramatically advanced our understanding of CM/SM and we must continue the work she started to bring relief and hope to children and adults struggling to live with Chiari malformation and syringomyelia.

The Bobby Jones CSF Research Endowment is a memorial to Marcy Carlson Speer and a way to build on the groundbreaking work that she started. Our goal with this endowment is to raise $5 million to provide sustainable funding for superior clinical and/or scientific projects.

WHO WAS MARCY CARLSON SPEER?

Marcy Carlson Speer was born October 1, 1959 in Indianapolis and was a true Midwesterner, having grown up in Indiana and Illinois. While in high school, she was interested in mathematics and genetics, the subjects which would ultimately become the key to her scientific career. She obtained a bachelor of arts in mathematics from Indiana University and subsequently obtained a masters degree from Sarah Lawrence College in their highly respected genetic counseling program and then finally her doctorate in genetics in 1993 from Duke University. Marcy had a truly unique blend of skills in statistics, biology and counseling which made her an outstanding scientist. She was a faculty member at Duke University Medical Center and rose quickly through the academic ranks, ultimately becoming one of only ten female scientists who were ever tenured in Duke.s Department of Medicine. In 2006, Marcy was also named as the director of the world renowned Duke Center for Human Genetics. Marcy was a prolific scientist, having worked on over twenty genetic conditions in her short lifetime.

However, one condition that was most dear to her was Chiari malformation. Marcy spent nearly 15 years establishing a genetic repository in order to identify specific genes associated with risk for developing Chiari. Her patient population remains one of the few Chiari genetic data sets in the entire world. In fact, Marcy published the first genetic screen on Chiari malformation which identified several chromosomal regions that contain genes implicated in the development of Chiari. She was internationally recognized as an expert in the syndrome. In addition to being a world class scientist, those who knew her considered her an excellent teacher, dear friend, and devoted mother and wife. On August 4, 2007, Marcy lost her valiant fight with cancer. Her enthusiasm for scientific inquiry in Chiari will continue to thrive in this exciting endowment.

RESEARCH ENDOWMENT GOALS

The Bobby Jones CSF Research Committee members are some of our nation’s leading scientists and are dedicated in their fight against CM/SM. Committee members are Allison Ashley-Koch, PhD — Committee Chair, Duke University Medical Center, Durham, North Carolina, Timothy M. George, MD, Dell Children’s Medical Center of Central Texas, Austin, Texas, John D. Heiss, MD, National Institutes of Health, Bethesda, Maryland, Bermans Iskandar, MD, University of Wisconsin Hospitals, Madison, Wisconsin, and Francis Loth, PhD, University of Akron, Akron, Ohio.

The Research Committee has identified key research areas that are a priority for Bobby Jones CSF, and thus, the areas that we would like to fund with the endowment as it grows.

• Promote the development of novel therapeutics and surgical interventions for the treatment of Chiari and syringomyelia.
• Current medical practices are successful for relieving pain and neurological symptoms for some, but not all patients. As such, it is a high priority to have continued development of therapeutics and surgical approaches so that all patients can experience healthy, productive lives.
• Uncover the underlying biological mechanisms, including genomic, structural and mechanical forces, contributing to the development of Chiari and syringomyelia.
• Elucidating the biological mechanisms that contribute to Chiari and syringomyelia is necessary to identify pre-symptomatic individuals who may benefit from early interventions, as well as to guide the development of new medical interventions.
• Foster enthusiasm and provide training for the next generation of Chiari and syringomyelia clinicians and scientists.

Continued progress in Chiari and syringomyelia research can only be achieved if the best clinicians and researchers of the next generation are excited and educated about the needs of the community.

DONATE TO THE MARCY CARLSON SPEER RESEARCH ENDOWMENT

We all have people in our lives like Marcy Carlson Speer who inspire us–not only for what they have accomplished, but because they influenced us in some profound way. Why not make your gift “in honor of” or “in memory of” a person who has impacted your life?

Every gift will build the endowment, which will ensure sustainable funding for projects that will lead to better therapies–and ultimately, to a cure– for people battling CM and SM.

DONATE ONLINE or MAIL YOUR DONATION to: Bobby Jones CSF, 29 Crest Loop, Staten Island, NY 10312