Our Mission

Our Mission is to spread awareness, connect and provide support to affected families and fund research for the ultra-rare mitochondrial ARS genes in order to pave the way to suitable treatment options and ultimately a cure.

Welcome

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We appreciate you taking the time to visit our page! For families with loved ones affected by the ARS disorders, we understand how hard this diagnosis is and how hard it can be to find resources or support. We are here to help! Our goal is to join families together, share our experiences, and to accelerate research. Our hope is we are able to provide all our loved ones longer, better quality lives.

Desiree Magee & Ashley Rowland

Founders of CureARS

who we are

CureARS is a 501(c)(3) non-profit organization located in Raritan, NJ. It is our goal to fund research that could lead to potential treatment options.  Research projects are carefully selected based on this goal with the objective to provide a longer and better quality of life for ARS patients worldwide.  The long-term goal of CureARS is to fund projects with the potential for a cure (such as gene therapy).

The mitochondrial ARS genes are considered ultra-rare and most families are sent home with little to no direction on what the future holds for their loved ones.  By connecting families, we strive to create a communication network that will enable families to be better equipped to advocate for their loved ones.  There are not many resources provided to these families and most medical providers do not understand these disorders. There are very few specialists who have experience with these conditions. Those affected are left with the burden of teaching the medical community about their conditions. By joining families, we can combine our resources and learn from each other. Many ARS family members struggle with finding their purpose and are confronted with no true path to helping their loved ones who are suffering from these debilitating conditions.  It is our hope that these families can find their purpose in being part of the solution.

#Knowledgeispower

Our Story

CureARS is a registered 501(c)(3) non-profit organization founded in 2021. This organization was created by two families with the goal of saving their kid's lives. Daphne Magee (EARS2 mutation) and Aubrie Rowland (AARS2 mutation) are both young girls affected by the ARS gene family. Currently, there is no treatment and no cure for these conditions. Families are not given much hope for future treatment. 

 

The biggest barrier to treatment is:

Lack of research

Lack of funding for research

Lack of patients to adequately understand each gene

After some discussion with researchers, it became clear that the family of ARS genes are closely related and there could be a common target for treatment. Separately, the genes are ultra-rare, however together they are a much larger group. Desiree Magee (Daphne’s Mom) and Ashley Rowland (Aubrie’s Mom) founded this organization to address these barriers with the ultimate goal of finding a cure for their children and others affected by this debilitating disease.