STXBP1 Foundation Team
Please meet the current members of the STXBP1 Foundation. We are all tremendously proud to serve this organization and dedicated to working relentlessly on fulfilling its mission. Short personal videos are also available on our Meet the Board page here.
Click any Member’s name to open a window on this page where you can read their bio and inspiration for volunteering and working on the STXBP1 Foundation.
Board of Directors
Charlene Son Rigby, MBA
President
Jared Barnum
Director, Technology
Cristina M. Brennan, Esq
Secretary
Daniele Greiner
Director, Development
Melissa Hioco
Director, Community Engagement & Events
Heather Jones, CPA
Treasurer
Russ Novy
Director, Marketing & Brand
Jackie Steinberg, MPH, BSN
Vice President & Scientific Liaison
Foundation Staff
James Goss, PhD
Scientific Director
Former Board Members
Anne Johnson, Co-Founder
Jennifer Clatterbuck, Co-Founder
Stephanie White, Co-Founder
Charlene Son Rigby, MBA, President
As President and a Founding Board Member of the STXBP1 Foundation, I am eager to help build awareness of STXBP1, and accelerate discovery of new treatments and hopefully a cure.
My daughter, Juno, started missing milestones around 4 months old. After many negative and inconclusive tests over a 2.5 year journey, we finally got an answer through a new type of genetic test -- whole exome sequencing. Her positivity and persistence inspire me. I am committed to doing everything I can to help her live a full and happy life.
Professionally, I have spent the last 20 years building new biotech and technology companies. Currently, I am Chief Executive Officer at Global Genes, a pan-disorder rare disease advocacy organization. My career work in rare disease started coincidentally right before my daughter, Juno’s, diagnostic odyssey started. This unplanned connection between my personal life and profession has helped push forward the search for a cure for my daughter and kids like her, and given my work deeper meaning.
I live in San Francisco, California. I previously served on the Board of the UC Berkeley, Haas School of Business, as the Co-Chair of the Haas Alumni Council, and as Treasurer of the Planned Parenthood – Golden Gate Action Fund. I received B.A. in Human Biology from Stanford University and an M.B.A. from U.C. Berkeley's Haas School of Business.
Jared Barnum, Director, Technology
Quality engineer by day and super dad by night, Jared Barnum joined the Board in March of 2022 as the Director of Technology.
After growing weary of the retail world, Jared completed a coding bootcamp program at the University of Richmond in 2018 which propelled him into the wild world of quality assurance and website development. His work experience includes Silverchair, Snag, and Carmax.
When he’s not saving the world from complex tech problems, he gets to pursue his true passion: being a dad to his kids, Georgia and Abel. Georgia, age 6, has a mosaic expression of STXBP1 with approximately 30% of her cells carrying the mutation. Abel has a full expression of the gene mutation that makes you Star Wars lego obsessed. As a pair, they are unstoppable - joyful, creative, and mischievous.
When the opportunity came up to join the STXBP1 board, Jared applied with zero hesitation. “When Georgia was first diagnosed, we were overwhelmed, frightened, and felt alone,” he said. “Finding the STX community saved us in many ways. The chance to give my time to help those who help us is the most important work I can think of.”
Cristina M. Brennan, Esq, Secretary
I live with my husband and two sons in New York. My son, Tristan, was diagnosed with an STXBP1 mutation after Whole Exome Sequencing genetics testing at age 5.
As a board member, I hope to boost our political advocacy and to bring global awareness to the search for a cure for STXBP1 disorders.
I have a B.S. in marketing/management and worked as an advertising executive for six years on brands including AT&T and Proctor & Gamble. I then attended law school, practiced general law for one year, and then spent the next thirteen years doing PR for politicians as Press Secretary and Director of Communications. I hope my political, legal and branding experience enhance the mission of the board.
Daniele Greiner, Director, Development
My husband Chris and I are proud parents to our daughter Cecelia, who received her diagnosis when she was three in March 2018, and her twin Marshall, who, although he does not have an STXBP1 mutation, bravely confronts his own challenges with autism.
Cece greets every single morning with a silent smile that says so much. She loves Super Grover, Spider-man, pizza Tuesdays at school, playing catch, and jamming to every song from “Five Little Ducks” to “Bohemian Rhapsody.” Like so many of our STXBP1 friends, Cece is the bright light that floods away the dark shadows of this rare and frustrating disorder. She is my why.
For the past 16 years, I have worked in the fulfilling field of development for several non-profit organizations. I am passionate about donor relations and have had the privilege of working with generous supporters who believe in missions at Children’s Hospital of Philadelphia, The Franklin Institute, and where I now serve as Director of Major Gifts and Planned Giving at Philadelphia Zoo.
I believe in the power of philanthropy, and I love building relationships between generous donors and their meaningful causes. I have always felt this was a privilege and a calling, but never more than I do now. It is an honor to link arms with the STXBP1 community as we relentlessly march forward to raise awareness for our families and advance hope-filled research.
Melissa Hioco, Community Engagement & Events
I grew up in the Central Valley of California, where I graduated from CSU, Fresno with a degree in Health Science. Soon after college, I married my high school sweetheart and we moved to Northern California, where we still reside today. After a few years of marriage, we were blessed with a beautiful baby girl. After four more years, which included a career change to teaching and a military deployment for my husband to Iraq, we were blessed with our second child, a son named Alex. His birth would forever change the course of our lives.
Alex’s development was delayed from the beginning, and he began to experience documented seizures at one year of age. Over time he was diagnosed with cerebral palsy, epilepsy, autism, ataxia, reflux, and a mitochondrial mutation. However, we knew that there was something else that we just had not discovered yet. We knew that we were on a mission to explain our unique and special boy. In 2014, after completing a newly developed whole gene exome test, we discovered what had been eluding us for many years. We discovered the culprit of all of Alex’s symptoms, an STXBP1 disorder; a rare genetic disorder. We were ecstatic that we had discovered the answer, yet saddened that there was little information known about the disorder.
With nowhere to turn, but to our own devices, we began to research what little was known. While searching for information we discovered an STXBP1 disorder online parent community. What an amazing discovery! It was clear that I had to get involved in this community.
I am now proud to be a founding member of the STXBP1 Foundation. It is my calling as a mother of a child with the disorder to be an advocate for our children and to raise awareness of this unique disorder. It is my goal & the goal of the STXBP1 Foundation to better understand STXBP1 disorders, and thus better understand our children in hopes of improving their lives.
Heather Jones, Treasurer
I am so honored to join the STXBP1 Foundation Board and to represent our close-knit and supportive community. I was introduced to the STXBP1 world when my son was just 3 weeks old. He was born with an unexpected cleft lip and palate and several other midline anomalies so the PICU doctors quickly ordered a microarray within hours of him entering the world. We didn’t expect the test to come back with any findings but were floored when we found out that Camden had a microdeletion of over 4 million genes (one of which was STXBP1) and when we were informed that he may never walk or talk. So began our journey to find out everything about STXBP1, prove our geneticist wrong and pour our hearts and souls into joining the fight to find a cure.
I wasn’t sure how I could use my skills to help join the fight, but I knew I wasn’t going to take a backseat. I am a CPA by trade and have been working in both the public accounting and corporate accounting sectors for the past 13 years. I am excited to leverage the business acumen gained during these years to help the Foundation lead the charge to finding a cure.
I’m supported in this journey by my husband, Matt, and our three kids – Clara, Ralston and Camden. We have lived in North Carolina since 2015 and resided in Ohio for many years prior.
Russ Novy, Director, Marketing & Brand
I joined the STXBP1 Foundation Board of Directors in May, 2017 as a founding member to help make a difference in our special community of families affected by rare genetic diseases. I personally believe that with the drive and determination of loving parents, we can accelerate awareness of the STXBP1 disorder and fund research to find better treatments and a cure. I am proud to volunteer as the Director of Marketing & Brand where I can leverage my strategic marketing experience gained from over 30 years of expertise and leadership roles at SAP, CBS, Adobe, Mitsubishi, as well as various agencies and start-ups.
I reside in Danville, CA with my spouse, John, and our two girls, Allison and Katelyn. Our Katelyn was diagnosed with the STXBP1 disorder in 2010 after 6 years of searching for the cause of her condition. Katelyn is the sweetest, most lovable little Angel and my favorite part of being her parent is simply slowing down to live in the moment with her.
Jackie Steinberg, Vice President & Scientific Liaison
It is an honor to serve as a board member of the STXBP1 Disorders Foundation. I hope to support the efforts of this group in bringing awareness to the disorder and in advocating for the STXBP1 community.
In October 2018, my youngest son, Alex, was diagnosed with a mutation in the STXBP1 gene at 3.5 months old. He had been having seizures since he was less than a week old and developed infantile spasms at around 2.5 months old. Though initially shocked with the news, I realized how lucky we were to have a diagnosis and for such as supportive network of fellow families. Each day, Alex teaches me to be a better parent, a better person, and to appreciate the moment.
Originally from the Midwest (via St. Louis and Indianapolis), I have lived in Boston, Atlanta, and Botswana (a small country in southern Africa) before making my home in Maryland with my husband Eric, our two children, and my mom; and where I work as an Infection Control Nurse. In addition to my nursing degree, I also hold a Bachelors of Science in Genetics and a Masters of Public Health in Epidemiology.
James Goss, Scientific Director
I am honored to represent the STXBP1 Foundation as its Scientific Director. I am a neuroscientist with 30 years of experience in academia, pharma, and non-profits. As an academic I carried out basic research on aging, neurodegeneration, traumatic brain injury, and genetics. As a faculty member at the University of Pittsburgh I taught courses on neuroscience and behavior, neuroanatomy, and neurobiology of aging. While there, I collaborated with a group of other scientists to develop gene therapies for several neurological disorders including Parkinson’s disease, chronic pain, and peripheral neuropathy. I was fortunate in being able to take a gene therapy treatment for severe pain from research concept to human clinical trials. I have worked to develop gene therapies at a small biotech company and biologic drugs at a global pharmaceutical. I have spent the last several years working with non-profit organizations, first in developing anti-HIV drugs and drug/devices for women, primarily for sub-Sahara Africa, and most recently I oversaw the gene therapy program for neurofibromatosis type 1 at a family foundation.
It is clear to me that the STXBP1 Foundation has made incredible progress over a relatively short period of time due to the tireless efforts of the parents and dedicated scientists. As Scientific Director I will use my knowledge and experience in neuroscience and drug development to meet the challenges ahead in finding a cure. Please always feel free to contact me if you have any questions concerning the scientific efforts of the Foundation.