Board
of Directors
Mark
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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