The local chapter of the ALS Association is doing big things for a community often seen as “small” by the medical world; people affected by Lou Gehrig’s disease.
What is ALS? Who gets it?
While heart attacks are often cited as “the silent killer” and cancer the face of terminal illnesses, Lou Gehrig’s disease or ALS often runs under the radar. This disease may be classified rare, but it is anything but tame.
According to the ALS Association, ALS is responsible for two deaths per 100,000 Americans. On average, 15 people are diagnosed with this indiscriminate disease everyday.
“The most difficult part for me is knowing there is no cure for this disease,” said Danielle Mikunda, whose husband, Russell Mikunda, was diagnosed with ALS in March.
“I hate having to watch my husband not be able to do things he used to enjoy doing like going for long walks, working on things around the house and yard.”
The disease affects nerve cells in the brain and spinal cord. The motor neurons transported between the brain, spinal cord and muscles degenerate and die ultimately along with the patient. People with ALS are usually totally paralyzed at later stages of this disease.
The ALS Association- Home services
ALS patients of Iowa can count on the Iowa chapter of the ALS Association to provide support. Executive director Josh Nuss said they are usually serving 175 to 200 families of Iowa. Unfortunately, the number does not fall gradually.
“It (number of clients) adds and flows because when you get an ALS diagnosis the typical timeframe is about two-to five-year life expectancy,” said Nuss.
The chapter helps patients or family members of patients complete day-to-day challenges like locating medical sources and resources. They recently started a new program that matches families with volunteers that would help do chores like lawn mowing or cleaning. The emphasis on volunteer work is on building a community and understanding the everyday struggles of dealing with the disease. They reached out to the Mikundas only a few weeks after Russell’s diagnosis.
“We had a home visit and we were given a lot of info about the association,” said Mikunda. “They offer support groups which have been very helpful to us.”
Sarah Martin, a Drake University senior majoring in Neuroscience is a frequent volunteer with the chapter on top of her individual research work. Her friendship with her high school principal who passed away from ALS inspired her to set a life goal of ending ALS. She has been conducting research on the disease since she was 14.
“I thought that I could use my abilities in science and math to help end ALS, but I also wanted to focus on other aspects of fighting ALS like working with patients,” said Martin.
However, getting up close and personal with real life patients gave her a different experience not found doing scientific research.
“They definitely gave me a perspective of ALS outside of research in a lab.”
Financial and infrastructural contributions
Patients struggling financially can also apply for financial assistance through the Quality of Life grant twice a year for 500 USD each. The money can be used for anything related to ALS. On top of that, necessary equipment for ALS patients are also available through the loan closet. Families can loan wheelchairs or walkers among other patient necessities until they are financially able to acquire one of their own.
In March, the association helped successfully establish a second ALS clinic in Iowa based in Johnston, the first one being in Iowa City. Nuss is particularly proud of this achievement because the clinic is one of the first of it’s kind in the nation.
“It’s a collaborative clinic between competing health organizations; the University of Iowa, Mercy and Unity Point,” said Nuss.
The clinic is also unique in that patients only need to be in one room and various specialists like neurologists, occupational, physical, speech and nutrition therapists among others would go there to see them, greatly increasing accessibility.
“If we ask patients to go see 10 different doctors, it’ll almost be impossible,” said Nuss.
Upcoming events and work
The association’s various “Walk to Defeat ALS” held across nation every fall and spring raises funds mainly going into research by scientists Nuss describes as the “smartest they can find” for treatment against the disease.
The ”Des Moines Walk to Defeat ALS” will be held on 7 October at Principal Park. At the time of writing, the goal of raising 425,000 USD is almost halfway reached with two weeks to go. 86 percent of the funds raised stays in Iowa for local care services. Nuss said the event is treated more like a reunion for previous volunteers and previous client family members.
“It is also important that with a lot of people who are affected by ALS coming together, it shows that they have a lot of support,” said Martin about the walk.
In May, the national branch of the ALS Association also oversaw the first FDA-approved treatment for ALS in 22 years. RADICAVA is known to be able to slow ALS progression for around 33 percent. The Iowa chapter is still negotiating with insurance companies over the availability of this drug in the state but Nuss is hopeful it will be settled in the next few weeks.
A small community made big
However small the ALS community seem, the ALS Association aims to make them feel as supported and big as possible. Dedicated people like Nuss and Martin give hope to patients and their family members even when staring at the face of a deadly disease. Danielle Mikunda put her faith in them and feels they did not let her down.
“They are determined to find a cure for ALS,” said Mikunda.
“In the meantime they are here to support all of us in this fight against ALS.”