Ron Dillon - learning a new way of hearing

Ron Dillon has a pragmatic view of life. Were he to participate in a “Finding Your Strengths” study, he would probably find that adaptability was one of his top traits.

Ron Dillon

He is in the field of mergers and acquisitions, meaning he helps people buy and sell businesses. He started his own company with his son, Rick, in 1990, after trying to buy the company Rick worked for. When that merger and acquisition company wouldn’t sell, Ron said, they decided to create their own, and the Dillon Group was born.

Entering into such negotiations means that being able to hear is crucial. Ron has dealt with hearing loss since his 30s, and has been through eight or 10 pairs of hearing aids through the years. When he learned about cochlear implants, he wondered if such an implant would help him. “If I didn’t get some help, I would have to retire,” Ron said. And at age 78, he wasn’t ready to consider retirement. So, the man who was born on the same day Franklin Roosevelt took office paid a visit to a doctor at the University of Kansas Medical Center. “I went in for a test just to see if it would help me hear,” he said.

His hearing loss was in part because of genetics on his father’s side. Environmental noise might also have been a cause, Ron said, because he spent a lot of hours on a tractor when he was younger. He was also exposed to some degree of loud noise while serving in the Army Corps of Engineers in a supply depot in Pusan at the end of the Korean War. How he lost his hearing is somewhat immaterial at this point. But being able to hear conversation is significant.

A cochlear implant is an option for people who are profoundly deaf or severely hard-of-hearing, and in the past was only offered for those who had lost more than 95 percent of their hearing. The implant consists of an external portion that sits behind the ear, and a second portion that is surgically implanted under the skin. Rather than amplify sounds like a hearing aid, a cochlear device bypasses damaged portions of the ear to directly stimulate the auditory nerve. In essence, it requires learning a whole new way of hearing, of processing sounds.

Ron had the implant about 18 months ago, and is more than halfway through the typical three-year adjustment period of learning how to hear with the device. It’s a trial and error situation, with adjustments based in large part on what the person with the implant tells the technician through the testing. But it’s impossible to tell if the adjustment helps or hinders until you get back out in the world and try conversing with people in different situations. With Ron, the latest adjustment didn’t help. “I sat around a table the other night, there were four of us, and I couldn’t understand one thing they were saying,” Ron said. “There was too much of an echo with the implant.”

So Ron will visit the doctor again to enhance the latest adjustment and try for a different outcome. But he feels like he’s getting closer to where he wants to be, and has no regrets about going this route. “With hearing aids,” he said, “I would get less than 50 percent word recognition. I get in the high 80s with the cochlear.”

Ron is mostly patient during this long process. Perhaps he’s learned that art through life circumstances. He and his first wife, Sharon, had four children by birth. When their oldest child was 13, they found themselves taking in a 17-year-old boy, at the request of a family friend, who desperately needed care and love. Ron said that boy blended quite easily into their family. Then came two and three-year-old siblings, a boy and girl, who lived off and on with the Dillons over the next 20 or so years, returning to them each time things fell apart with their birth parents. Ron still keeps in contact with the siblings, though Sharon died 25 years ago from cancer. In fact, just recently Ron tried to impart some words of wisdom to his adopted daughter, when she wrote to tell him that she and her spouse were fighting constantly, mostly about money. Ron’s advice: “Next time that comes up sit down together and review your checkbook. If you find that your fighting has increased the funds in your account then by all means keep on fighting, but if it has not then you have proven that fighting did not help so stop it, put your arms around each other and pray or dance or do something to release the tension.”

After Sharon’s death, Ron didn’t remain a widower for long. Upon the advice of a friend who was entering his fifth marriage, Ron placed an ad in the “singles” section of a newspaper. But he did so in jest, stating he was a wino living in a cardboard box looking for the right person. “I just wanted to see who would answer,” Ron said. Apparently, a certain woman named Marjorie picked up on that sense of humor and responded. Ron said they knew in about three weeks that they were going to marry. They celebrated their 24th wedding anniversary in May.

Ron’s oldest son, the 17-year-old he and Sharon took in, passed away several years ago from cancer. He has also lost his youngest brother, two brothers-in-law and a sister-in-law all to cancer. But such is life. “You accept the challenges as they come along,” Ron said, which is also his attitude about his hearing loss. “And when I look back, I’ve had so many blessings.”

Ruthi Ostgulen - a fight against breast cancer

For most of us, life is routine. We follow the same daily and weekly schedules, and the days and the weeks pass. But then one day, perhaps you fall and break a leg, or your job changes, or you face an impending move. Or maybe, like Ruthi Ostgulen, you find a lump in your breast.

Ruthi Ostgulen

But a lump could be nothing, right? Ruthi hoped so, and since she had recently had a clear mammogram, thought she would just ignore it and continue on with her life.

“But then I kept hearing ‘breast cancer,’ ‘breast cancer,’ breast cancer,’” Ruthi said, referring to a sudden awareness of stories in the news and other conversation. So she decided she would visit the doctor, get some peace of mind.

The doctor’s visit led to an ultrasound, then a biopsy, then a few tense days of waiting for the results. Ruthi was back at the doctor’s office, last October 15, when he came in and said, “The bad news is it’s cancer. The good news is I think it’s small and can be treated.” That’s not the news Ruthi had expected to hear. “I was in shock,” she said. “I was always healthy, never had any issues.”

Suddenly Ruthi had to make choices without much medical knowledge, and certainly no experience.  The first decision was whether to have a lumpectomy or mastectomy. Prayer and reflection led her to opt for the lumpectomy. That went well, she thought. But then came the pathology report, showing more cancerous tissue. Once again, she had a choice to make. Further lumpectomy, single or double mastectomy?  “There are all these huge decisions you have to make in a short amount of time,” Ruthi said. “But how do you make that decision?” For her, each decision could mean life or death, and a drastic physical change.  

Ruthi spoke to a young mom at Holy Cross who had just been through this. Afterwards, and after more prayer and reflection, she felt confident that a double mastectomy was the way to go.  She had surgery after Thanksgiving, and again thought it went okay. Ruthi said the doctor used a super glue, so that she didn’t have big staples, or even a wrapping of bandages.

Because Ruthi’s diagnosis was a fast-growing cancer which had spread to the lymph nodes, she had more treatment to endure. Chemotherapy started January 4, once a week for 16 weeks, about three hours of her day. She took anti-nausea medicine, but still needed a long weekend to recover and get her strength back before returning to work on Monday. A side effect, she knew, would be hair loss, including eyebrows and eyelashes. “My hair started coming out in clumps,” she said. So she decided to shave her head.

All along, Ruthi had the support of her husband and a friend/neighbor who she describes as wonderful, along with family, friends and co-workers. Meals, cards, conversations, shared tears, weekly chemo goodie bags. But for the head shaving, she was joined on her front porch by her husband, son Erik and a close friend, all of whom shaved their heads with her. Her son in El Dorado and brother-in-law in Albuquerque, New Mexico, also shaved their heads that day long distance.

When Ruthi’s chemo treatments ended, radiation began. Five days a week for six weeks. “My skin peeled, like a sunburn,” Ruthi said. But finally came the July day when treatment ended, and Ruthi could start trying to return to a semblance of what her life had been, before she got caught up in the whirlwind of a cancer diagnosis. Sadly, too, during this time, she had to deal with the tragic death of her brother in a plane crash.

“Looking back, this seems like a bad dream,” Ruthi said. “But then I look in the mirror.” Her hair is growing back in, a salt and pepper look, and maybe she’ll decide to color it, and maybe she won’t. Reconstructive surgery, she says, seems unnecessary right now, especially since it would mean having to endure more time in a hospital, recovery and rehabilitation. 
Those things aren’t a priority for her. But she knows what is. “I want to spend more time with my kids (five of them) and grandkids (10 of those),” she said. “I want to do things again to help others.”

Ruthi is participating in a clinical trial through the University of Kansas Medical Center, where her weeks of treatment will be studied and compared. She faces five years of visits with her oncologist and ten years of follow-up with the clinical trial. She would be more than willing to offer advice and share her experience with someone else newly diagnosed with breast cancer.

And then there’s her faith. Ruthi has become intimately acquainted with God through the ordeal of this past year. “You cry, ‘where are you, God,’ and then you see he’s right here,” she said, explaining how each day’s devotion was exactly what she needed that moment, or the hug of a friend brought comfort, or another card in the mail let her know she was on someone’s mind. “I felt God though this a lot.” And that’s what she would want someone else to know, “God is there, and He will get you through it.”

Bill Allen - learning to fly

Say you are 60-something and retired. What might you do with your time? When Bill Allen found himself in that position, he went to Johnson County’s Executive Airport and asked about flying a plane. “They said why not take a lesson,” Bill said. And that’s just what he did.



Bill Allen

Bill got his license a year and a half ago, and has been having a great time taking to the skies. He and his wife, Mary, recently flew to Paola, parked the airplane, walked over to a barbecue joint, ate, and flew back home.

Bill is a private pilot, and flies VFR (visual flight rules.) That means he can’t fly through clouds, using instruments to guide him. He must be able to physically see the sky and surroundings when flying. “I’m a fair weather flyer,” he explained.  “I always have to be alert.”

Flying lessons involved a number of requirements. A minimum of 40 hours flight training is necessary, which includes 20 hours of dual instruction and 10 hours of solo flight. Then comes a written test of 60 multiple choice questions, and a practical flight test with an FAA-designated examiner. For Bill, training included flying solo to Topeka and Emporia in Kansas; and Lake of the Ozarks and Columbia in Missouri, making numerous landings and take-offs. He had to practice landing at night too.

“I get nervous taking any test,” Bill said, so you might be able to imagine his discomfiture flying with the FAA representative. “I had to fly in a circle without losing altitude,” Bill said. “I had to purposely stall the plane and then recover. The FAA representative pulled the throttle and would say, ‘Uh oh, engine failure,’ and I had to simulate a landing.”

The written test included questions such as, “What is Class B airspace?” and “What are the minimum flying conditions for VFR?”

Though the tests are behind him now, Bill still has requirements before getting in the pilot’s seat. For example, he has to get a weather briefing before flying. And he can’t fly at night unless he has had three night landings in the previous 90 days. But it’s not the landing that is of greatest concern, Bill said. “Taking off is the most risky and critical part of the flight,” he said.

Bill is a CPA by trade and was a partner in a national CPA firm. He was the CFO at Bethany College in Lindsborg, and CFO for Mennonite Housing in Wichita. The latter involved building houses and making repairs for the elderly and low-income. Bill also was a co-owner of a company that built furniture for all the Cessna’s private jets, and for Air Force I. The company employed 500 people, and generally built tables and entertainment centers.

He always had an interest in airplanes, though never felt compelled to pursue that interest. “It was just a wild hair,” he said about deciding to get a pilot’s license.

Though he flies for fun, Bill looks for ways to serve others. He applied to help with Honor Flights as a guardian. Honor Flights is a program that takes veterans to see the World War II memorial in Washington, D.C., something many had given up on ever seeing because of financial and physical constraints. A couple of weeks ago, Bill helped with the Challenge Air program, whose purpose is to give airplane rides to children with special needs. “There were about 20 planes there to give rides to over 120 kids,” Bill said. “I helped load the kids and their guardians into the airplanes. It was a fun event and great to see the smiles on the kid's faces.”

Bill also spends each Monday at St. Joseph Hospital, transporting patients within the hospital, and supports a variety of efforts through the Metro Lutheran Ministry.

He recently joined the Holy Cross men’s cycling group for a ride, and thought he would ride with them again. But as for flying? “It’s something I like to do,” Bill said. “I don’t play golf. I don’t have a lot of hobbies.”

Bill & Doris Warrick - carving out retirement

Bill & Doris Warrick with their largest gnome

Bill and Doris Warrick have spent the last 30 years carving out a life of retirement together. Literally. Bill took up woodcarving, specializing in gnomes and occupational figures. Doris paints the pieces after they’re carved.

Bill designed a series of gnomes to reflect each of the 12 months. So you might see a gnome with a heart in February, a flag-bearing gnome in July, or a Saint Nicholas gnome in December. Besides gnomes, Bill has turned blocks of linden wood into such things as doctors, priests, farmers and firemen. He said he likes to start with the head because that’s the most detailed. Otherwise, Bill explained, you could carve the whole thing and then mess up with the head, and have to start all over.

Before turning to woodcarving, Bill kept busy as a process and tool engineer with John Deere, where he worked 35 years. “I determined how to make farm equipment,” he said, a simplified statement for figuring out form, function and materials. He retired in the early 1980s, and started teaching himself how to carve wood after serendipitously attending a Woodcarvers Club. Doris, who said, “I never knew I had a talent,” began painting the pieces. She has continued to paint, using the medium of acrylics to paint beautiful landscapes.

Bill said when he was young he did some whittling. Then as a Boy Scout, he was encouraged by his scoutmaster to be self-sufficient. That included learning how to carve a spoon out of a stick so he could eat while on a hike. He bought his first wood-carving set on a trip to Switzerland in 1976, though he stuck it in a drawer and forgot about it upon returning home. It would be some years later before he made use of those tools.

Eventually, Bill and Doris were traveling the country, selling their carvings in a variety of art shows. They also accepted commissions to make special pieces, such as a football player, arm raised to pass the ball, a carpenter with a tool box, and a dentist with a toothbrush. They didn’t accept payment up front, and surprisingly were only stiffed financially once. “A lady came to the booth and said she wanted a commissioned piece,” Doris said, “so we sent it to her but she never paid for it. Then a few years later, I saw a woman standing by our booth, just standing there, and I wondered why.” Unbelievably, it was that same woman, who was now offering her long overdue payment.

Bill and Doris celebrated their 68^th wedding anniversary on Sept. 1. That’s a lot of time to spend with someone. “What amazes me is that we never got on each other’s nerves,” Bill said, a rather unassuming declaration of love. Doris simply attributes it to living a good life, and working through problems as they arose.

Bill and Doris met at a United Service Organizations dance when Bill was a Navy cadet stationed in Ottumwa, Iowa, during World War II. “Boys were lined up on one side, the girls on the other,” Bill said. “I picked her out across the room.” That first dance led to Bill hitchhiking 700 miles roundtrip every two to three months to see Doris. She explained that’s just what you did back then, along with writing letters, when you didn’t have a car and telephones were too expensive. They married a year later and settled in Iowa.

Bill and Doris have a son and daughter, seven grandchildren, seven great-grandchildren and one great-great grandchild, spread across the country. Their daughter lives in this area, which is what brought them here a few years ago. Their apartment is filled with memorabilia, like Bill’s goggles and headgear from his time as a Navy pilot, shelves of their woodcarvings, and many of Doris’ paintings. All in all, a reflection of a life well lived.

Shirley Sword - crocheting the stress into gifts

Shirley Sword is a woman who had lots of stress. So much stress in fact that she was prescribed valium and took it regularly. Until the day she walked right out in front of a car, oblivious to her surroundings.

Thankfully she wasn’t hit by the car, though it did change her thinking. “It scared me so much I threw the valium away,” Shirley said. “But I still needed something to relieve the stress.”

So she took up crocheting. That was back in the 1960s, and she has been crocheting ever since. She crocheted her way through her brother’s death in a work-related accident, her brother-in-law’s death and her divorce. Shirley said she taught herself how by following directions in a book. That worked well unless the pattern was too difficult, in which case she enlisted the help of her mother to read the directions while she crocheted. Since then, she has learned the stitches and no longer needs instructions. She remarried  nine years ago to Holy Cross mission partner Bill Goetzke, and continues to crochet daily.

“It’s relaxing,” she said of crocheting. “It takes your mind off other things.” Shirley said she isn’t one to sit and watch television without some yarn in her hand. “I’m either crocheting or working someplace. I can’t sit idle.”

She has crocheted baby blankets for her 14 grandchildren, and as they have graduated from high school, she sends them off with a crocheted afghan. She has made blankets for her children’s friends and for her hairdresser’s baby. And, she makes blankets for the babies born to Holy Cross mission partners. That alone is 16 or 17 blankets so far this year, and an average of 20 to 25 each year.

Shirley Sword with one of her blankets

Shirley had to use a little resourcefulness when her dental hygienist was pregnant. “She thought it was twins, but then she had triplets,” Shirley said. So Shirley started searching, and finally found identical yarn to match the two blankets she had made.  Another time, Shirley was asked to make an additional blanket for a little girl who had become so attached to the original blanket Shirley made, that when she inadvertently left it behind at a restaurant, she was inconsolable. To prevent that happening again, the little girl’s grandmother asked Shirley to make a spare.

She doesn’t waste any leftover yarn, but instead turns it into a variety of blankets she donates to St. Luke’s Hospital. She uses heavier yarn to make blankets for a group of ladies at Tallgrass Creek Retirement Community, who in turn give them to the homeless. And she purchases the yarn herself to make blankets for Holy Cross babies.

Shirley doesn’t accept payment, nor does she ask for donations. Though many times people will supply her with yarn they pick up here and there. For Shirley, it’s a labor of love, and a use of a God-given gift. “It’s letting me be of a service to somebody,” she said.

That’s especially true for her since she fell down the steps a year ago and compressed vertebrae in her back. Now she can’t stand for very long, so she had to give up helping serve meals at various churches and charitable organizations. Shirley continues to volunteer four times a month in the gift shop at St. Luke’s. She also embroiders tea towels for her grandchildren’s wedding gifts, and to donate to the Metro Lutheran Ministry silent auction. And she used to make pocket Bible verse cards that were distributed to clients at MLM.

But crocheting is her first love. She has eight patterns she knows by heart, and she also makes some of her own designs. Shirley crochets every day, and when asked how long she rests after finishing one blanket before starting another, she said, “Five seconds.” She said she is thrilled each time she realizes she started with a piece of yarn, and suddenly it becomes a blanket.

“It’s not a job,” Shirley said of crocheting. “It’s something that’s a pleasure. If anyone can take a blanket and enjoy it, that means a lot.”

Gina Hart-Kemper - a musical life

Gina Hart-Kemper found her calling when she was in the fourth grade. It wasn’t playing piano. She said it only took a two-month battle with her mom trying to teach her to play before Gina, just a first-grader, realized that wasn’t going to work. But her calling did involve music.

“I still remember it clearly,” Gina said of that time in the fourth grade. “I heard somebody demonstrate the flute, and that was it for me.”

Dr. Gina Hart-Kemper

That’s not to say she was a prodigy or anything similar. No, in fact, she couldn’t even coax a sound out of the flute the first day she tried. But she continued to practice, finally mastering the instrument. She went on to receive a doctorate of music arts, and has performed and taught throughout the country. “Now I’m known as the person with the pretty sound,” Gina said.

She is in good company as a flutist. George Washington, James Madison, Leonardo da Vinci, Edgar Allan Poe, Tchaikovsky and Henry Mancini all are known to have played the flute. As are the actress Halle Berry and former secretary of state Condoleezza Rice.

Gina said trying to figure out what to do for a career was a little bit challenging when she was of college age. Her family didn’t necessarily think that a career in music would amount to much, according to their idea of success. “Al I knew was I could play the flute and that was what I wanted to do, Gina said.”

She did purse a teaching degree for a while, because she knew she loved teaching, but found that for her, the degrees in music performance came easier. And those degrees did indeed open doors for her that led to being able to teach.

Gina teaches both adults and children, and said they learn completely differently. “Adults have more of an idea of what they should sound like,” she said. “They have higher expectations and get more frustrated. But kids, they’re happy just to pick up the flute and play.”

She said the flute, for as popular as it is, can be quite frustrating to learn. Rather than blowing into the opening, you have to blow above the opening, she explained. Having good lung capacity is, of course, a benefit, which makes the ability of one of her students so surprising.

Gina said she teaches a middle school student who has cystic fibrosis, which severely affects breathing. “But she plays the flute like you can’t believe,” Gina said. “She probably beats out a lot of kids her age.” In fact, her lessons tend to serve as breathing treatments, though there are many times, Gina said, that she has to pause to calm down and catch her breath so she can resume.

Another student Gina teaches is a little girl with Tourette Syndrome, a neurological disorder that manifests itself in multiple motor and vocal tics. Gina said that learning to play the flute has helped give her a focus and increased her self-confidence.

One of the adults Gina teaches is a pharmacist from Iran who had no previous music experience.  “He really wanted to play the flute,” she said, “and stuck it out. He’s really improved and enjoys it.” His motivation was that he wanted to play the Persian flute, called a ney, and has since learned how to do so.

Gina is one of a group of co-owners of the Village Music Academy in Prairie Village, where she teaches two days a week. She also teaches a music appreciation class through the Ft. Scott Community College, and directs the handbell choir at Holy Cross. Besides flute, Gina teaches private piano lessons, after having taught herself how to play in middle school. And she continues to perform solo and in ensembles.

Music is of primary importance to Gina, and she works to keep it in schools, in spite of budget cuts, by volunteering her time to help band directors ready students for competitions. She also is a volunteer judge for competitions at the middle and high school level. She believes everyone can benefit from learning music.

“From my perspective, it’s all good,” Gina said. “You learn discipline, how to listen, confidence, how to motivate yourself. And it’s okay to make mistakes. I tell students that making mistakes is how you learn. Music fills our souls. It stimulates the brain but also stimulates the heart.”

She said that while she loves teaching, there are times when she thinks about stepping away. But then someone tells her, “You can’t quit because you have to respect the gift God gave you. Quit and you’ll be miserable.” Gina said that’s true, because when she did try to quit, she was miserable.

Allison Foss - living with a chronic disease

Allison Foss

Myasthenia Gravis – heard of it? Chances are you haven’t since the prevalence is about 1 in 5,000 people who have the chronic disease. Meet Allison Foss. She can tell you lots about MG, as it is commonly known.

Allison was diagnosed when she was only five years old. Her symptoms were double vision and crossed eyes, slurred speech and difficulty swallowing. The name comes from Greek and Latin words meaning “grave muscle weakness.” Muscles impacted by MG are those that receive signals from the brain to contract, meaning the muscles that are used to open or close your eyelids, smile, chew, swallow, hold your head erect, breathe, and move your arms and legs.

For Allison, the weakness is constrained to her face, speech and upper body. “When I am really tired,” Allison said, “I may have difficulty swallowing or in very bad incidences difficulty breathing. Heat and cold really affect me as does a lot of physical activity.”

The early years were especially difficult for Allison. She took high doses of Prednisone, a suggested treatment, from the time she was in second grade to eighth grade, she said, and was the fattest child in school as a result. Then when she went off the drug, she literally shrunk. In fourth grade, she also underwent surgery to remove her thymus gland, another suggested treatment option. Since MG is one of the numerous types of Muscular Dystrophy, Allison said, her parents tried to get her involved with others who had either MG or MD.

Allison Foss on the left with friends,
hoping to raise funds to support the MGA

“I served as the state ambassador for the MDA for Iowa,” she said, “and then went to summer camp with other kids who had MD.” Allison became one of “Jerry’s kids,” named for Jerry Lewis who worked tirelessly to publicize MD through a series of telethons. Though she never met the comedian and actor, she did serve as a poster child in two local Iowa campaigns for the Muscular Dystrophy Association.

For years, Allison was treated for having congenital MG. The turning point came when she had what is called a Myasthenic crisis her freshman year in college and ended up in a hospital. A neurologist suggested she visit Mayo Clinic for a more specific diagnosis and treatment options.

“I was devastated and embarrassed,” Allison said, “because here I was trying to be in college and had all this medical stuff hanging over my head. But it turns out going to Mayo Clinic was the best decision of my life.”

That’s because Allison met Dr. Andrew Engel, who she says is “kind of like the Godfather of Myasthenia Gravis.” He spends most of his time doing research on the disease, and thus only accepts a handful of patients. Allison said she feels blessed to be one of them. He diagnosed her with having MUsk Antibody Myasthenia Gravis, the rarest kind of MG. It requires a completely different type of treatment than other forms.

Now, Allison spends one morning a month at the University of Kansas Medical Center receiving Plasmapheresis treatments, a filtering process similar to dialysis that separates her plasma from her blood and replaces it with manmade plasma. It's the only treatment that allows her to function as best as she can, but it's a mind-boggling amount of almost $10,000 per treatment. She recently had to have the fistula port in her arm, used for the treatment, reconstructed because it had developed an aneurysm. An incredibly painful surgery, Allison said. Besides the monthly treatments, she returns to Mayo Clinic once a year, and has allowed her plasma and muscle tissue to be used for research purposes.

Living with a chronic illness can be overwhelming, controlling, and a negative experience. But not for Allison. “It impacts what I do but it doesn’t control me,” she said. “It shapes who I am, and it’s probably where my passion comes from to help others.”

Allison is a social worker with Johnson County Developmental Supports, working with youth and adults who have developmental disabilities. She helps them manage day-to-day activities, including employment, financial and medical needs. She serves on the board of directors for HopeBUILDERS, and is actively involved with the Greater Kansas City MGA Walk, Run and Roll fundraiser, the stewardship committee at Holy Cross, Gamma Phi Beta Alumnae of Iowa State University and P.E.O., a philanthropic organization for women.

Living with MG is difficult, but it is a normal for Allison. There is no cure, and it’s progressive. But Allison said she knows that feeling sorry for oneself isn’t healthy, so she doesn’t give in to that. Instead, she turns it around. “I take it and make it a positive thing in my life,” Allison said. “I have a passion for non-profits. I want to give back.”

Allison also works hard as her own advocate, and stands up to help others too. It is her hope that people would come to a greater understanding that there is a need for more accessible and affordable healthcare for everyone, because, as she said, illness can strike anyone at any time, often causing extreme financial hardship, as well as the added stress of fighting with insurance companies over coverage. Allison also has a strong faith, and prays that there will one day be a cure for MG.