Dave lives in Mexico, NY with his wife Julie, and son Jaden, who turned 16 December 2017. Dave has been an active member of the Foundation since the beginning and has provided a great amount of leadership to the Foundation over the years and has served many roles during his tenure with the Foundation. Dave made a career change in 2004 to enable him to be more involved in Jaden’s care as well as allowing him to get involved with the PMD Foundation. He is the Vice-President and Principal Agent at The Insurance Place with locations in Fulton and Oswego, NY.
Dave is committed to working with all those in the PMD Community to raise money for research, family support and education. His philosophy is, “if I don’t do something, who will?” He is dedicated to making a difference for his son and those touched by PMD.
Carlos Labrada is the Vice Chair of The PMD Foundation, after joining the board in 2014. He lives in San Diego, CA with his beautiful family. He and his wife, Yezabel have three children; Samantha, Carlitos, and their younger son, Leonardo, who is 4 years old and affected by PMD. Carlos earned his degree at MIT and works full-time for QualComm. Carlos attended the 2014 Riley PMD Family Conference in Indianapolis and is quickly picking up the science behind PMD. He is eager to make a difference.
Doug lives in Madison, NJ with his wife and 3 daughters. He is also the proud father of Jack who was born with PMD and died at age 6 in 2013. Doug has a BS in Accountancy and a BS in Finance from Villanova University and currently works for Credit Suisse. Doug has been on the board since 2016 and also manages the accounting functions (as well as a variety of other tasks) for the PMD Foundation.
I have been a PMD dad for 28-plus years now, and James has kept me honest all this time. I am semi-retired from a 30-something year career as a special education teacher. I have worked as a volunteer for parent advocacy groups here in Vermont for a long time, and I’m excited to try to share what I can with the Foundation. James and I have engaged in a long-running train obsession and will ride any train we can get on. We also run model trains at home. I also enjoy gardening, cooking, and photography. I also have a daughter, Allison, who is currently a college junior (and a terrific sibling). My wife, Andrea, and I live in Milton, Vermont.
Geoff Toman was born in England and came to the United States in 1948. He grew up in the southern California area where he earned his undergraduate degree from Woodbury College and his MBA from Pepperdine University. Geoff served his country for 6 years in the U.S. Air Force during the Vietnam era. Since his discharge from military service, he has had various Accounting and Finance employment positions including Internal Audit, Treasurer, and Chief Financial Officer responsibility. He currently is a seasonal employee for the H&R Block Corporation, having just completed his 15th year as a Certified Tax Return Preparer. He is very active with the American Legion, holding the position of Jr Vice Commander of the 9th District in the Department of Georgia. He has 2 children and 7 grandchildren. Geoff lives in Cumming, GA with his wife of 54 years Barbara (Bobbie) near his two families including 8-year-old grandson William Mains who has PMD. He is looking forward to his association with all the wonderful people of the PMD Foundation who are working together to discover the cure for this dreaded disease and so we can have a world without PMD.
Don was one of the three Founding Board Members in 1999. In 2001, he was elected Board Chair at the first meeting of the Board of Trustees. He retired as Chair in 2015 and is a member emeritus. Don received a BS in Mechanical Engineering and an MBA, both from The University of Virginia. He has over 50 years’ experience in the use of Computer Technology for business management in Finance, Manufacturing, Research, Development, Marketing, and Sales. He retired from Astra/Zeneca Pharmaceuticals in 2000. He has 30 years’ experience as a non-profit Board Officer and Board Member and as a community volunteer. He spends many hours as the “PMD Ambassador” at the American Society of Human Genetics (ASHG) & Child Neurology Society (CNS) annual conferences; the National Institute of Neurological Disease and Stroke (NINDS), with other non-profits; with Leukodystrophy non-profits, Clinicians and Researchers as a Founding member of the World Leukodystrophy Alliance (WLA) and the Global Leukodystrophy InitiAtive, (GLIA). He is the husband of Dr. Grace Hobson, PhD, a retired Sr. Scientist, Lab Head and Principal Investigator for PMD diagnostics and research at the Nemours, AI duPont Hospital for Children and a member of the PMD Foundation’s Scientific Advisory Board.
A driven business leader and steward for causes dear to her heart, Maureen contributes greatly to non-profit organizations nationwide – primarily contributing to organizations focused on entrepreneurship, women’s issues and youth. Founder of a branding and marketing agency, 29 Design Studio, Maureen helps organizations grow with purpose and be more efficient. With a triple bottom line mentality – People, Profit, and Planet – she strives for excellence in her work, driving growth – not only for herself, but for her community and loved ones via her generous spirit. Maureen lives in Upstate New York with two spirited toddlers, Max and Penny, and her husband, Marco. She has a nephew with PMD.
Tina is the sister of Dr. Jim Garbern, who passed away in 2011 after many years of committed involvement in the PMD Foundation. She joined the PMD Foundation in his honor to carry on his vocation. Tina lives in Saratoga, CA with her husband, Doug, and her daughters, Danielle, Alli, and Sami. Tina acquired her B.S. in Computer Science from the University of Maryland. She was employed for a number of years as a Strategic Business Manager by Hewlett Packard. Tina is currently a self-employed photographer (Tina Case Photography) with a growing cliental. She was actively involved in creating the new PMDF website.
Jeff is the past Board Secretary and past Foundation Chair . Jeff has been on the board and an Executive Committee member since 2001. He has three children, Rachel (18 yrs), Jack (17 yrs and in Heaven since June 20, 2015) and Nathan (14 yrs). He has led many projects for the foundation, some of which include co-chairing a PMD Working Group in Virginia with Augusto Odone, serving as the inaugural President of the World Leukodystrophy Alliance (a consortium of advocacy groups) and representing PMD for the GLIA scientific consortium (the Global Leukodystrophy Initiative started in Washington D.C. in 2013). He works full-time at Bristol-Myers Squibb as Director of Operations in the Worldwide Commercial division.
Kristi Roher lives in Gilbert, Arizona, with her husband Bob and their three sons: Carter, Joshua, and Camden. Camden was born on April 8, 2011 and diagnosed with PMD in May of 2012. He is the first generation diagnosed with PMD in their family. Kristi has spent her career in education, as a teacher, counselor, and intervention specialist. Since Camden’s diagnosis, she dedicates her free time working with a local charity in Arizona who evaluates special needs individuals for assistive technology to help access their world. Kristi is passionate about family outreach and support for bright minds in complicated bodies, just like our PMD warriors. She is honored to serve as a PMD Foundation board member.
Patti’s three sons were all affected by PMD, Georgie (4/1/73 – 4/9/85), Adam (6/11/76 – 3/18/01), and Brantley (4/30/82 – 3/24/85). She has a long family history of PMD, their’s is one of the largest PMD families ever studied. One of the first identified PLP1 PMD mutations was identified in Patti’s family by researchers from the Indiana University Medical Center. In 1985 she started a PMD Family Support newsletter. Then in 1990 Patti hosted the first Annual PMD Family Support Conference in Indianapolis, Indiana, the annual conference still continues to this day. She also created the first online support groups for PMD families on Yahoo (2003) and Facebook (2009). Patti has been a member of the PMD Foundation board since its inception in 1997. In 2010 she won the nationally known Jefferson Award for her work with PMD families. Patti is still actively involved in promoting family support and awareness though her work with PMD Family Support, a 501(c)3 nonprofit that was founded in 2015. Affectionately referred to as “Mama Bear” or “Mother Hen” Patti is one of the first contacts for many PMD families across the US and around the world. She is very proud of “her families” and all their personal accomplishments like; The PMD Foundation, Morgan’s Place, Unlimited Play, Hope for Gabe, Triumph for Tomas, Jones Family Walk and Roll, and many other endeavors that raise PMD awareness and promote research.
Rob Gasperetti lives in Franklin Square, New York, which is located on Long Island. He is married to Kristen, and has four sons. Brian (the oldest) and Dylan (the youngest) are affected with PMD, while his middle sons Trevor and Andrew are not. Brian and Dylan were not diagnosed until 2004, when the same symptoms were noticed in both boys. Brian additionally was born with a cleft palate, which, although not symptomatic of PMD, possibly delayed the proper diagnosis. He was 8 at the time. Rob is currently the Human Resources Director at a private club and was formerly a Detective with the New York City Police Department for 21 years.
Katie is the mother of four children. She and her husband live in Madison, New Jersey. Their first child, Jack, was born with the connatal form of PMD in 2006. He lived a beautiful life and died at the age of 6 1/2 in January of 2013. He was blessed to have twin sisters who were born in 2009 and a baby sister born in February of 2014. Katie has a BA in Elementary Education from Villanova University and MA in Reading Specialization from Columbia University. She left her job teaching 4th grade at the Collegiate School in New York City to care for Jack round-the-clock at home when he was born. During Jack’s lifetime, Katie organized the largest family team for the YAI Central Park Challenge three years in a row in support of the Roosevelt Children’s Center, Jack’s preschool for children with multiple disabilities. She formed fundraising teams of family and friends each year for the Miles for Matheny walk and 5K to support the Matheny School in Peapack, New Jersey, where Jack later went to school. Katie raised money to obtain a service dog for Jack through 4 Paws for Ability, the non-profit organization in Xenia, Ohio which trains service dogs for children with special needs.Katie accompanies Sugar, a former 4 Paws breeding dog and trained therapy dog, on visits to the local library, her daughters’ elementary school, and Matheny Katie has enjoyed connecting with other families and supporting the PMD Foundation since Jack’s diagnosis in 2007. She is grateful to be involved with the foundation as a board member in memory of her son.
Laura Spear is a longtime founding member of the PMD Foundation and is a Registered Nurse who attended Gloucester County College and LaSalle University. She had both a son (Jared Michael Spear 1/27/91-8/26/10) and a brother (John Michael Laprocido 6/20/66 – 8/16/80) affected by classic PMD. She lives in Marlton, New Jersey with her husband Rand, and son, Michael. Laura worked at the Voorhees Pediatric facility as a staff nurse and a relief charge nurse. She was also a Bayada visiting nurse. Laura currently works part-time as a paralegal in Philadelphia. She volunteers at the Archway School (Jared’s old classroom) and also works with the elderly and mentally challenged, visiting them, helping them with their activities of daily living and spending time with them. For over 20 years, she has been a tireless advocate for the fight against PMD. Laura was largely responsible for organizing the first PMD Consortium meeting in October 1997 and was Chairwoman of past PMD Golf Outings. Laura authored articles in Advance for Nurses and Exceptional Parent magazine and was featured with Jared on Fox 29 Ray of Hope segment, where they did an expose on PMD. She also appeared several times on CNN Comcast Newsmakers. She was also instrumental in having articles published in SJ Magazine and the Delaware News Journal. She did a PMD presentation with Jared at Rowan College for future nursing students. Laura was the founder of the Tech Tot library at Githens Center in Mount Holly, New Jersey. This library offered communication devices and switch toys to those with special needs across Burlington County, New Jersey. Even though Jared and John are gone, they still guide Laura’s work as an advocate for those affected by PMD as well as those with special needs.
Jeremy resides in Gilbert, AZ with his wife, Dr. Christie Holmes, sons Carter, and Camden, and 4 step-children. Camden was born April 8, 2011, and was diagnosed with PMD in May 2012.
Jeremy is an Arizona native and attended Arizona State University where he earned a Bachelor’s of Science in Finance and an MBA from Grand Canyon University. Professionally, Jeremy works for Edward Jones Investments where he is the supervising principle for over 130 branch office locations in California.
Jeremy has a passion for volunteering his time with various organizations including the United Way, Big Brothers Big Sisters, and his local church. The PMD Foundation is one organization that Jeremy, along with many other PMD families, has identified as a great resource of information and support following the diagnosis of his son Camden.
Marianne comes from Vienna, Austria, and moved to the Netherlands 13 years ago. She works at Amgen, a large bio-pharmaceutical company, in the Supply Chain Organization. She is married to Sander and they have two children: Selina and Valentin. Valentin was born in June 2013 and diagnosed in December 2015 with PMD. Ever since Marianne is constantly in touch with colleagues from various departments and researchers around the world to find a cure or a treatment and build a strong case to be heard at bio-pharmaceutical companies. Furthermore, she wants to ensure that Europe (ELA – European Leukodystrophies Association) and USA (PMD Foundation) work closely together to achieve our common global goal to cure PMD.