Frank is a retired businessman. Before his retirement, Frank was President of Pittman and Davis, a direct marketing catalog company specializing in the sale of gift packages of fresh fruit and other perishable gift food items. From 2005 to 2011, Frank served as secretary for the Board of Directors. He was elected President in January of 2012. He holds a bachelor’s degree in both business administration and sociology from Trinity University and a Masters degree from Southern Methodist University. He has HSP and lives in San Antonio.
Linda was installed as a member of the SPF Board of Directors in 2003 and co-chaired the Program Committee. She is a graduate of Southern Ohio College and was a purchasing agent. 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. She lives in Fremont, California with her husband. In addition to serving as SPF Vice President, she continues to chair the Program Committee and oversee other special programs including co-chairing the TeamWalk Committee.
David is an SPF incorporating board member, served on the Foundation Steering Committee and has been the SPF Treasurer since inception. He is the Chief Financial Officer for Pezold Companies and has over 25 years of business management experience. David has served his community in a variety of leadership and membership roles including president of Columbus Kiwanis Club. David holds a BS in Accounting from the University of Alabama and earned a CPA license in 1982. David has childhood-onset HSP, lives in Columbus, Georgia and has one daughter . David also chairs the SPF Financial Committee.
Jean is a retired Registered Nurse who spent the final 20 years of her career as the Head Nurse/Manager of a private plastic surgery clinic in Vancouver. She joined the board in 2005. Jean has organized several connections in the Vancouver area and spent 6 years on the local municipal Advisory Committee on Disability Issues. She lives in West Vancouver, BC, Canada, close to her 2 sons and 2 granddaughters. Jean has HSP and was fortunate to be essentially symptom free until the early 1990’s.
Mark Weber is one of the co-founders of the SPF, and was its first president. He serves as the SPF’s legal counsel, and chairs its research grant committee. Mark also started and maintains the PLS-Friends email group. He is an attorney and served for eleven years as a prosecutor in Massachusetts. Currently he is in private practice in Connecticut concentrating in child abuse and neglect cases, and criminal defense. Mark holds a BA in economics and psychology from Boston College, and a doctor of laws degree from Suffolk University Law School. He has been diagnosed with HSP. He lives with his wife Andrea in Sherman, Connecticut.
Corey joined the SPF Board in October 2008. He is a Scientist and Vice President and General Manager of Laboratory Operations for Covalence Drug Discovery in Springfield, Massachusetts. Corey received his PhD in Molecular, Cellular Biology and Biochemistry at Brown University for work in the field of DNA repair. He was a post-doctoral fellow at the University of Massachusetts Medical School in the field of cell cycle control of gene transcription. His professional interests are to research appropriate reliable clinical diagnostic testing as well as cures for genetic diseases. His other interests include coaching soccer and softball teams.
Greg Pruitt has served 26 years as Hickman County Judge Executive, administering all facets of county government in his home county. While functioning in this capacity, he has served on and chaired a number of local, regional, state, federal, and multi-state organizations involving many areas such as tourism, health and social services, transportation, and economic development. He has been dealing with adult onset HSP since 2002. About a dozen members of his family tree over the past three generations have dealt with HSP. Greg holds a Bachelor’s Degree in Political Science and Business Administration from Murray State University and a Juris Doctorate Degree from the University of Kentucky. He lives in Clinton, Kentucky, with his wife, Norma. They have 3 children and 4 beautiful grandchildren.
Jackie worked as a Medical Assistant until she was diagnosed with Hereditary Spastic Paraplegia in 1997. When diagnosed she opened her own business. She has volunteered in many ways, including a civil rights march in Georgia, working at a no-kill animal sanctuary in Utah, being a Big Sister, and worked on several political campaigns. She is currently the SPF State Ambassador for Iowa. Her first book, Spiritual Clarity was published in 2005. Jackie spends many hours a week studying reports on medical research, communicating with others who are similarly involved, and looking for ways to raise money for SPF. She was named to the board in 2013. Jackie lives in West Des Moines, Iowa with her husband, son, and two dogs.
Tina is a retired teacher who still stands by the motto that she greeted each student as they entered her classroom—“What we learn with pleasure, we never will forget.” With a Master of Arts in Theatre and a Master of Fine Arts in Directing from Lindenwood University – St. Louis, Tina uses her performance and people skills to inform, advocate and fundraise for the Spastic Paraplegia Foundation. Tina has HSP and was clinically diagnosed in late 2002. She has since received her genetic diagnosis of SPG7, and now looks forward to upcoming patient drug trials. Tina has been part of the SPF family since 2006 and has been the Annual Conference Chairperson for 2009 & 2013 (St. Louis) and 2016 (Chicago). She is again excited to a part of the 2017 Annual Conference in Atlanta. Tina became a member of the SPF Board in 2012 and has continued her efforts in finding a cure for HSP & PLS. Tina lives in O’Fallon, Missouri with her husband Tim and her support dog, Thunder.
John was elected to the SPF Board in May of 2013. He is from Alexandria, VA and graduated from the College of Charleston in 2009 with a Bachelor of Science in Economics before entering the Financial Services Industry. After three years with Morgan Stanley he transitioned to Edelman Financial Services, a financial planning firm headquartered in Fairfax, VA. He was diagnosed with HSP in early 2003 and is the second in his family with the condition.
David Ress, PhD, is expert in many forms of scientific imaging including MRI, CT, electron tomography, x-ray imaging, and neutron imaging. He is presently an Associate Professor in the Neuroscience Department and Technical Director of the Center for Advanced MRI at Baylor College of Medicine. Dr. Ress also leads the High-resolution Brain Imaging Lab (HIRBIL), which focuses on developing new techniques to improve the spatial resolution and specificity of functional MRI, and applies these methods in the study of human neuroscience.
Laurie is an Account Executive for an IBM Business Partner who specializes in IBM hardware and services. She completed her Bachelor’s Degree in Management at Franklin Pierce University. Laurie was diagnosed with HSP in 2009 and became the NH Ambassador for The Spastic Paraplegia Foundation in 2010. She has helped with New England fundraising activities and has organized local gatherings. When not working, Laurie enjoys spending time with her family and her dogs. Her goal is to find a cure to prevent her children or grandchildren from having to suffer with HSP in the future.
Ben’s career has focused on healthcare and higher education for close to 20 years. During these years he has worked for the numerous agencies of the state of Georgia, including the Georgia’s mental health system, Medicaid agency and university system. In his current work for the University System of Georgia, he works closely with leaders of the Medical College of Georgia, 20+ state nursing programs and emerging leadership in the health informatics. He hopes to use these connections and knowledge of how healthcare systems work to further the research efforts of the SP-Foundation. In 1988 he received a bachelor’s degree in history, with a concentration in Soviet Studies from Brandeis University and a master’s degree in public administration from the University of Georgia in 1997. For fun, Ben plays out as often as he can, playing viola, guitar and bass.
Annette Lockwood is an SPF incorporating board member and served on the foundation steering committee. She retired from ExxonMobil in 2006 after twenty-six years in a variety of positions. She is active in the SPF community organizing various fundraising initiatives including the ExxonMobil Employees Favorite Charities Campaign. Annette obtained a Mechanical Engineering Degree from Marquette University. She has adult-onset HSP, which also affects many individuals in her family. She has two children and lives with her husband in Fairfax Station, Virginia.
Jim was a pharmaceutical sales representative for Daiichi Sankyo. He holds a bachelor’s of science degree in marketing from the University of Tennessee at Chattanooga. He has HSP and lives with his family in Brentwood, Tennessee.
In 2015 almost a dozen HSP Patient Advocacy Organizations from all over the world met in Madrid Spain to join forces to establish an international connection and resource to make sure a first rate, well established and impeccable HSP Patient Registry is set up. This will allow our next Clinical Trials to go forward smoothly and effectively. Good communication channels have also been established so as to allow for a smooth flow of information among scientists and organizations such as The Spastic Paraplegia Foundation.
When Clinical Trials begin in 2017 it may require as many people as possible for the Clinical Trial to be effective. If you have HSP or PLS, please add your information to our data base so we can keep you informed. We are missing a lot people's email address, so if you just want to add your email address. just enter your name, address and email and we'll add it. That way, we will be able to reach you quickly at a lower cost. Your privacy is very important to us. We will never share any of your information with any individual or company without your permission.
93 cents of every dollar you donate goes into our mission of research and service. 4 cents goes to fundraising and 3 cents goes to data management and general expenses. Our all volunteer Scientific Advisory Board makes sure that we are supporting only the very best research projects on the planet. The Spastic Paraplegia Foundation is an all volunteer run foundation. Our highly skilled staff, Scientific Advisory Board, Medical Advisors, CPA, Attorney, President, Board Members - all of us are working hard every day probono because we strongly believe in this cause. We know a cure is right within reach and we ask you to please join us in reaching by making a tax deductible donation.