HOPKINS, Minn. — A Hopkins woman, Erica Barnes, was a part of making it happen.
Barnes said the funding is $150,000 over four years. It will allow the University of Minnesota to staff that council. The council will consist of 18 people, including Mayo Clinic rare disease specialists and other and experts from across the state.
“The vision is to make sure that Minnesota stays and leads the world in rare disease care,” she said.
We first introduced you to Barnes in 2016. That is when her journey of rare disease advocacy was starting. She created Chloe's Fight, A Rare Disease Foundation to fund U of M research on rare genetic childhood diseases. Erica Barnes’ daughter Chloe died from Metachromatic Leukodystrophy (MLD), a rare degenerative neural disorder similar to ALS, but moves at a more rapid rate in a child. Barnes watched as her daughter slowly lost her spunk and function when she was one.
Chloe underwent a bone marrow transplant at Mayo Clinic but died six weeks later.
“The vision is to make sure that Minnesota stays and leads the world in rare disease care,” she said. “The council’s goal is to accelerate research. Over the 7,000 rare diseases, only five percent have treatment. That is not even a cure. That is just a treatment option. It takes an average 7-8 years for a rare disease patient to receive treatment diagnosis. That is 7-8 years of going to specialist after specialist and getting no answers.”
An outcome Barnes doesn’t want any parent to experience.
Barnes’ daughter Chloe died from Metachromatic Leukodystrophy (MLD), a rare degenerative neural disorder similar to ALS, but moves at a more rapid rate in a child. Barnes watched as her daughter slowly lost her spunk and function when she was one.
Chloe underwent a bone marrow transplant at Mayo Clinic but died six weeks later.
Grief isn't pretty.
But to counter the ugly Barnes had an idea.
“I read about a council in North Carolina. I told my husband, we were doing the dishes, and I said, ‘You know I really think we just need to have an advisory council in the state of Minnesota.’ I remember him looking at me and saying, ‘that is never going to happen. You know nothing about passing a bill,’” she said.
Now, nearly three years later after that conversation in their Hopkins home, Barnes was a witness to change. The bill, which bears her daughter's name, passed unanimously in both chambers Monday night.
Barnes said the council will also provide a conduit for rare stakeholders an avenue to make formal recommendations for policy to address issues faced by people with rare conditions
“Never under estimate the power of a woman trying to prove her husband wrong.
My husband was skeptical but supportive as well,” she said with a big smile. “It is such good feeling. We worked so hard.”
And Barnes believe the work is just beginning.
“I think the test of really finding your calling is when you achieve something and you know that means there is so much more than needs to be done,” she said. “Last night was the best feeling in the world to know we got the advisory council established but I know that is just the beginning of the work and what we can accomplish as a state.”