ARRE Foundation appoints Amanda Johnson as Chief Development Officer

PORTLAND, Maine - Jan. 28, 2021 - PRLog -- The ASXL Rare Research Endowment (ARRE) Foundation, a family-led organization supporting research for rare genetic conditions 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, communications, and outreach events to advance research and improve 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 strides 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 on board and for the expertise she brings to bear. Her thought leadership will have a significant impact for ASXL patients and their families who struggle with extraordinary challenges everyday," said Laura Badmaev, co-founder and chair of the ARRE Foundation. "Her breadth of experience across research, rare disease, and entrepreneurial nonprofits will be essential to shaping our strategy and creating sustainable growth."

"We are excited to work with Amanda. Our long-term goal is to develop effective therapies for the ASXL-related disorders, and being able to further support basic science and clinical research programs that advance our understanding of these conditions are critical to our mission," 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 are members of the ARRE Foundation's Board of Directors and founders of the ASXL patient registry and biobank.

About the ARRE Foundation

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.

Many children with an ASXL syndrome have severe physical, cognitive, speech, and visual impairments as well as severe behavioral, social, and mental health issues. Currently, ASXL-related syndromes are underdiagnosed, there are few evidence-based publications for reference and there are significant unknowns about the mechanisms behind ASXL syndromes.

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