There is nothing like a parent’s love to turn a hopeless diagnosis into a fight to save the lives of children around the world. In 2009, Jennifer and Tripp were sitting in the office of their son’s geneticist when they were told the words that would forever change their lives: Aidan has Hunter syndrome (MPS II). At that time, the science was limited, and MPS II remained a terminal disease.
Aidan’s parents didn’t accept that fate and consequently, Action for Aidan was born. This nonprofit, based out of New Hampshire, has tirelessly worked to raise money for Hunter syndrome research over the last four years. They are determined to find a cure and have been incredibly successful in their efforts thus far. Brooke Carter Sukhavasi, the organization’s Chief of Operations and Aidan’s aunt, stated, “We wouldn’t be where we are today without the support and love of our incredible community — we are all committed to finding a cure, and we are forever grateful for that.”
With hope for a cure in mind, Action for Aidan has graciously donated $200,000 to Project Alive. With these funds, the organization is even closer to their goal of providing funding to MPS II research. “Patient organizations have always been a strong driving force behind MPS research. We are so thankful to Action for Aidan and Project Alive for their continued dedication to helping those affected by MPS II,” said Dr. Kim Stephens, Executive Director of the MPS Research and Treatment Center at UNC, Chapel Hill.
Project Alive is a parent-led nonprofit organization committed to finding and funding a cure for Hunter syndrome (also known as Mucopolysaccharidosis or MPS II) through research and advocacy. The organization funds promising curative research, assists researchers and industry with designing research studies for our community, and advocates for the most effective and efficient system of clinical research, evaluation, and approval.