ARRE Foundation appoints Amanda Johnson as Chief Development Officer
The ASXL Rare Research Endowment (ARRE) Foundation, a family-led organization supporting research for a rare genetic condition affecting the ASXL genes, announced the appointment of Amanda Johnson as Chief Development Officer. Johnson will serve as the organization’s first staff member and will oversee fundraising, marketing and communications, and outreach events to support the ARRE Foundation’s mission of advancing research and improving quality of life for ASXL-impacted children.
“I am honored to serve as the ARRE Foundation’s first employee,” Johnson said. “The foundation has made incredible progress as an all volunteer-run organization to date, and I am excited to accelerate the organization’s progress to support ASXL patients and their families.”
Johnson brings over 10 years of experience in donor-centered fundraising, event management and nonprofit administration experience to the ARRE Foundation. Previously, she served at the Pulmonary Hypertension Association, DC Central Kitchen, and the ARVO Foundation for Eye Research. She holds a BS in Organizational Communication from Ithaca College and an MA in Nonprofit Management from the Notre Dame of Maryland University.
“We are thrilled to have Amanda onboard and for the expertise she brings to bear. Her detailed and thought leadership will have a significant impact for these ASXL patients and their families who struggle with extraordinary challenges everyday,” said Laura Badmaev, co-founder and chair of the ARRE Foundation. “Amanda’s breadth of experience across research, rare disease, and entrepreneurial nonprofits will be essential to shape our strategy and create sustainable growth.”
“We are excited to work with Amanda and we are looking forward to her dynamic leadership in taking the ARRE Foundation to the next level. Our long-term goal is to develop effective therapies for the ASXL-related disorders, and being able to further support both basic science and clinical research programs that advance our understanding of these conditions are critical to the mission of our Foundation,” said Wen-Hann Tan, BMBS, a clinical geneticist at Boston Children’s Hospital. “This is an incredible next step in moving ARRE forward in our mission to expand the research and treatment options for the ASXL-related disorders,” adds Bianca Russell, MD, a clinical geneticist at UCLA. Both Dr. Tan and Dr. Russell are members of the ARRE Foundation’s Board of Directors and founders of the ASXL patient registry and biobank.
About the ASXL Rare Research Endowment Foundation and ASXL syndromes (AЯRE)
The ARRE Foundation supports research to increase the understanding of the ASXL genes and improve the treatment and management of individuals with congenital ASXL syndromes. These ultra rare syndromes, which include ASXL1 (Bohring-Opitz Syndrome), ASXL2 (Shashi-Pena Syndrome), and ASXL3 (Bainbridge-Ropers Syndrome), are caused by a random genetic mutation on the ASXL genes around the time of conception and can happen to any person.
Many children with an ASXL syndrome have severe physical, cognitive, speech, and visual impairments as well as severe behavioral, social, and mental health issues. Most individuals are completely dependent on caretakers for every aspect of their care. ASXL-related syndromes are under-diagnosed due to challenges recognizing the diagnosis, shortage of genetics services, and the cost of genetic testing. There are few evidence-based publications for reference and significant unknowns about the mechanisms behind ASXL syndromes.