Meet the Team
In 2017, Benjamin Jr, our beautiful son was born. His smile was contagious and he brought so much comfort and love to the family! He had significant feeding problems during the first four months of life, and although he was a happy baby and so much fun, he was missing milestones. Benjamin was diagnosed with ATRX syndrome in 2019, after a very long diagnostic odyssey. During this journey, we worked hard to build a good support team for Benjamin, with limited resources in our small community of Albuquerque, NM.
-Once the cause of Benjamin’s health issues and delays were uncovered, we were told that there was no treatment. The geneticist explained that the condition is rare, and fairly newly discovered in the world of genetics, which meant that there is not a lot of information available, or much to be done about it. We asked, “well, how do we get a treatment started?” and we were told that we could keep an eye out for clinical trials on https://clinicaltrials.gov/, as that would be the place to access the treatment. Once we got home, we looked at the clinical trials website, and found that there was nothing listed for our condition. Meanwhile, our beloved son was struggling to move, to see, and to use his body effectively. He had episodes where he was clearly in pain but could not communicate where it hurt, or how to help him. We had no answers, and this was unacceptable.
We scoured the internet, and started teaching ourselves about genetics, and specifically neurodevelopmental disorders. We connected with key stakeholders in the rare disease space, and started learning about the rare disease, biotech, and pharma industries. We reached out to researchers all over the globe to ask questions about our specific disease and learned that there are in fact research groups working on ATR-X syndrome, and some are actually looking into treatments! The problem is that all this information is stuck in silos, and these researchers are not able to easily make their work known to the greater research world or the patient community.
In 2021, we founded ARA to help unify researchers and drive research forward to generate treatments for ATR-X patients, like our son, Benjamin. Since then, Jennifer has fully committed herself to the advancement of clinical and research understanding of rare disorders, in particular neurodevelopmental disorders and is an active participant in industry leading conferences held by key stakeholders such as National Organization of Rare Disorders (NORD) and American Society of Gene and Cell Therapy (ASGCT) where she advocates for ATR-X syndrome.
Jennifer is degreed in Finance and Business Administration, with a certification in Human Resources. With a history of driving high performing teams, she has a strong background in Sales, Leadership, and Partner Business Management and utilizes these skills to cultivate meaningful partnerships with key stakeholders and drive our mission forward to benefit the patient community.
Ben has a degree in Business Administration and a work background in Sales and Business Leadership. His focus has been on Leadership Development and his teams have won several industry awards for their work in this area. He mentors others in his field and also consults with startup organizations to build their leadership teams. Ben utilizes his skills to support ARA’s organizational mission, helping with execution of key objectives, and tries to keep us laughing along the way.