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Board of Directors

Mark WeberMark Weber, Esq., President

Mark is a founding board member. He is an attorney with eleven years experience as an Assistant Attorney General and Assistant District Attorney.  

Mark has been an active PLS community leader since 1999, launching and managing a PLS email support group, serving as editor of a PLS newsletter and organizing fundraising initiatives. In 2001, he co-chaired the steering committee to form the Spastic Paraplegia Foundation. In addition to serving as SPF President, Mark chairs the Scientific Advisory Committee and co-chairs the Public Relations Committee.

Mark holds a BA in economics and psychology and a JD. He was admitted to the Massachusetts Bar in December 1986. He was initially diagnosed with PLS in 1997 and later diagnosed with Apparently Sporadic Spastic Paraplegia although he is still under observation.  Mark and his wife and two young boys live in Sherman, CT. 

Kathi Geisler, Vice President

Kathi is a founding board member. She is a marketing communications professional and has worked with numerous non-profit organizations both as a staff person and volunteer.  She has also served as a member of her town’s Commission on Disabilities.

Kathi has been an active HSP community leader since 2000 when she created the first regional support group in the United States for HSP. She also served on the Hope Science Project Walkathon committee and assisted with the HSP website and email support group. In 2001, she co-chaired the steering committee to form the Spastic Paraplegia Foundation. In addition to serving as SPF Vice-President, Kathi chairs the Communications and co-chairs the Programs Committees among other responsibilities.

Kathi holds a BS in psychology as well as an MBA. She has adult-onset HSP. She has two daughters and lives with her husband in Chelmsford, Massachusetts.

David Lewis, Treasurer

David is an SPF incorporating board member and served on the foundation steering committee. He is the chief financial officer for a major corporation and has twenty years of business management experience. 

David has served his community in a variety of leadership and membership roles including president of Columbus Kiwanis Club and president/treasure of Homeowners Association. In addition to serving as SPF Treasurer, David chairs the Financial Committee.

David holds a BS in Commerce & Business Administration and earned a CPA license in 1982. David has childhood-onset HSP and lives with his daughter in Fortson, Georgia.

Marlene Doolen, Secretary

Marlene is an incorporating board member and served on the foundation steering committee. She is the office manager for a major corporation and has over twenty years experience as an office manager/executive secretary.

Marlene has been a leader in the HSP community for many years, providing patient support and information and assisting with conferences and fundraising efforts. In addition to serving as SPF Secretary, Marlene chairs the Administrative Services and Volunteer Program Committees.

Marlene holds a BA in management and is a Certified Professional Secretary. She has adult-onset HSP. She has two children, five stepchildren and 12 grandchildren and lives with her husband in Austin, Texas.

Annette Lockwood, Member

Annette is an incorporating board member and served on the foundation steering committee. She works for a major corporation and has more than twenty years experience in sales, management, pricing, marketing and procurement.

Annette has been active in the HSP community for several years, organizing a clothing line project that raised significant dollars for research.  She was also involved in conferences. As an SPF board member, Annette co-chairs the Development Committee among other responsibilities.

Annette holds a Mechanical Engineering Degree and a Professional Engineer License. She has adult-onset HSP. She has two children and lives with her husband in Fairfax Station, Virginia.

Carolyn Sartain Anderson, Member

Carolyn was installed as a member of the SPF Board of Directors in 2002.  She co-chairs the Public Relations Committee among other responsibilities.

Carolyn was a special education teacher, having earned the distinction of several nominations for teaching awards. She retired early from her teaching career due to health reasons. Her volunteer efforts include serving as a board member for an Independent Living Center, substantial involvement with the Special Olympics and assisting with political campaigns. 

Carolyn holds a Bachelor’s Degree in Special Education and Elementary Education as well as a Master’s Degree in Special Education. She has PLS and lives on Chincoteague Island, VA. 

Paul Brockman, Member

Paul was installed as a member of the SPF Board of Directors in 2002. He co-chairs the Development Committee among other responsibilities. 

Paul is President of a durable medical equipment company that he founded in 1994. Prior to that, he has an impressive background in sales and marketing. He is an active volunteer with his church. 

Paul holds a BS from Ohio State University. His wife and young son have childhood-onset HSP, although for many years it was thought his wife had cerebral palsy. They and their other son live in Columbus Ohio.

Linda Gentner, Member

 

Linda was installed as a member of the SPF Board of Directors in 2003. She co-chairs the Program Committee among other responsibilities.

 

Linda is a graduate of Southern Ohio College and was a purchasing agent. Since leaving work, she has volunteered for more than a decade for several community organizations including the area's leading hospital, where she has held leadership and board positions.

When Linda developed PLS, she became involved with the PLS online patient community and served the UCSF ALS Research Center as a contact for PLS patients. Thanks in large part to her efforts with the online patient community, several PLS research grants were awarded and the NORD PLS Physician's Guide was developed. Linda began to serve as a volunteer for SPF soon after the organization launched. She lives in Fremont, California with her husband.

Medical Advisor

John K. Fink, M.D.

Department of Neurology Director, Neurogenetic Disorders Clinic, University of Michigan, Ann Arbor

Dr. Fink, a leading investigator of primary upper motor neuron disorders whose laboratory has discovered several HSP genes and is dedicated to discovering the causes and treatments for HSP and PLS, serves the SPF as its primary scientific and medical advisor. He has the largest PLS and HSP clinic in the United States. Please contact him here.

Scientific Advisory Board

The Scientific Advisory Board (SAB) reviews grants applications to the SPF. Their recommendations are given to the Board of Directors, who make appropriations based on their report. Members of the SAB are distinguished in their knowledge of PLS and HSP and related research and clinical management.

Martha A. Nance, MD; Scientific Advisory Board Chairman
Struthers Parkinson's Center, Golden Valley, MN

Mary Kay Floeter, MD, PhD; Member
Chief, EMG Section, National Institute for Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH), Bethesda, MD

Terry D. Heiman-Patterson, MD; Member
Professor of Neurology, Drexel University College of Medicine, Philadelphia, PA

Laura Ranum, PhD; Member
Professor, Department of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, MN

Mark Gudessblatt, MD; Member
South Shore Neurological Associates, Long Island, NY

 

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