Vermillion resident Serena Clarkson is looking to raise funds to travel to Washington D.C. and advocate for people with disabilities.
“The Muscular Dystrophy Association (MDA) in Sioux Falls had mentioned that there was an opportunity to go to Washington, DC and advocate for newborn screening and accessible air travel,” Clarkson said. “People with my disease would probably be caught at birth with the genetic mutation instead of waiting till whenever the doctor perceives the diagnosis problem.”
Clarkson, 46, suffers from a Charcot-Marie-Tooth disorder (CMT) which affects about one in every 2,500 people according to the National Institute of Neurological Disorders (NIH).
Clarkson and her husband have recently moved to Vermillion to be closer to better doctors and medical benefits.
An account was opened at the Vermillion Federal Credit Union Aug. 6 to accept donations to help pay for Clarkson’s trip to Washington. People may send donations to the credit union in Clarkson’s name in care of the MDA.
Clarkson said she has roughly two months to raise $3,500 to cover travel expenses for herself and her daughter who will be acting as her caregiver.
According to Clarkson, the MDA offers a travel stipend of only $25.
The advocacy event itself runs Oct. 15-18.
With only a few months left, Clarkson doesn’t know if there is time to set up any elaborate fundraisers.
“I’m kind of in a time crunch,” she said. “Right now I’m at my community’s mercy of help.”
Clarkson stated that if she doesn’t make enough funds she will save whatever funds she gets for the next event happening in 2021.
Clarkson has spoken to some local organizations in search of funds with no luck yet but plans on speaking with more.
Clarkson says her CMT is caused by too much protein in her DNA.
“My nerves and muscles waste away and atrophy making me just bone,” she stated.
“It’s a very ugly disease, very degenerative and very progressive. At this time there’s no cure and no way to slow it down.”
Clarkson has had 79 procedures fixing body parts affected by her disease since 2010.
According to Clarkson there is a shortage of advocates for the disabled and so in many cases options are limited.
“Right now we just learn to adapt and that’s pretty much our options,” she said. “So I want to take me and my daughter and advocate for people with this disease”
Clarkson mentioned that she will speak with South Dakota Sens. Mike Rounds and John Thune and Rep. Dusty Johnson.
“We get an hour with each senator to plead our case,” she said.
Clarkson stated she plans not only to discuss newborn screening and air travel but also how the disease affects her daily life, the importance of the Medicaid disability program and increasing NIH funding so more drugs can be tested.
“Granted, $600 a month isn’t a lot but it’s all we have,” Clarkson said. “We need our medicines. With opioid crisis right now nobody wants to give us pain meds but nobody understands the pain that a person with CMT constantly lives with. Our pain never goes away.”
With her degenerative condition Clarkson doesn’t know how much longer she’ll be able to actively advocate but says she will do all she can before she loses the use of her legs in the next few years.
“[My doctor] said if I take it easy I can have five to seven years,” Clarkson said. “I’m thinking if I have five years I’m going to do what I want. When I do lose them I can say I did that when I had my legs.”
What Clarkson wants to do is help others in her community.
“We do support groups for people with diseases that need help,” Clarkson said. “I give you the latest information. I can point you to resources. There’s an MDA closet in Sioux Falls where you are free to check out equipment or assistive devices if they have them at no cost. You can use them for as long as you need to. A lot of people don’t know that.”
Clarkson said she also points people toward organizations and programs that can help install assistive devices in and around homes or remodel to make a more disability-friendly living space.
“These are things I didn’t know you could get free of charge,” Clarkson said. “I like to tell people there are options.”
Clarkson also makes herself available for emotional support.
“If you need to just talk because you’re in pain and you hurt I’m here for that,” she said. “My phone is on 24 hours a day for anybody to call and vent.”
Clarkson stated she has people who call her regularly at all hours with questions and concerns such as how to speak to a doctor, physical therapist or family member about their disease or disability.
“That’s what I do,” Clarkson said. “I don’t get paid by anybody. I do all my stuff free of charge.”
Clarkson has many success stories including one man who came to a support group unaware of the many resources available to him.
“We helped him get on disability,” Clarkson said. “He didn’t even know how to apply. He got his disability so he could have his surgery. He ended up getting his leg amputated and they gave him prosthetics free of charge after we helped get him hooked up with the program.”
Clarkson stated she is open to working with and advocating for any type of disability.
“I have worked with people who are bipolar,” Clarkson said. “I’ve taken them to counseling and advocated for them. One girl in Nebraska got my phone number from AA because she was addicted to her pain pills. I went with her and we toured rehab facilities and helped her get checked into a facility so she could get help. I’d never done that before but it was interesting and I enjoyed it.”
Whether or not Clarkson is able to attend the event in D.C. she plans on doing as much as she can while she still can.
“It’s easy to get down and depressed but why?” Clarkson said. “I’m actually trying to find a job to help other people.”
Having studied accounting, Clarkson wishes to find an accounting job while still advocating.
“I want to join as many groups as I can,” Clarkson said. “I want to join gyms and show people out there, hey guess what? I have CMT but CMT does not have me. I just need help to make this possible.”
Clarkson says she is in the process of coming up with a way to collect funds from donors to her cause, possibly setting up a bank account specifically for this purpose.
Anyone wishing to donate may contact her directly at 605-670-7970 or firstname.lastname@example.org.