Rep. Dusty Johnson Talks with Disabilities Advocate for Policy Change
VERMILLION, S.D.– Serena Clarkson suffers from Charcot-Marie-Tooth disease, a progressive disease caused by her genes producing too much protein.
“I have CMT but CMT does not have me.”
The disease affects the function of nerves in her body parts and causes constant pain, “When I step down on smooth land, every time I step down it’s like shards of knives with every step.”
Since being diagnosed in 2010, Serena has undergone 79 procedures on her arms and legs due to the effects of CMT.
She has since moved to Vermillion to be closer to better doctors and care.
With no cure, Serena’s left with only one option; to fight for a better way of living with a disability, “As long as I have legs and a mouth, that’s what I’m going to do.”
Her active voice on the need for policy changes for disabilities was loud enough for Representative Dusty Johnson to sit down with Serena and talk about what needs to be done.
“To me, meetings like this are a lot more meaningful than just deciding to yell at the other side,” says Johnson.
Like most disabilities, the repercussions of CMT don’t stop at the pain. High medical expenses and the importance of Medicaid Disability Program were only a few of the policy issues discussed.
Serena hopes to raise enough money within the next year to go to Washington D.C. to share her story with more representatives.
“Congress can help me maybe find a way to where it’s more affordable for me to get better healthcare and not have to worry,” says Clarkson.
Moving forward, Johnson said he wants to work as a team when Serena gets to D.C.
“We want to take this even broader. You’re just an incredible advocate and your ability to tell the story and do it in a way that is effective and persuasive… it’s a rare gift you have,” says Johnson.
Clarkson is fundraising to get herself and her husband out to D.C. within the next year to continue advocating for policy change for those with disabilities. She said the trip would cost about $8,000 total.
People can send donations to help with trip expenses. An account was opened under Clarkson’s name at the Vermillion Federal Credit Union.