‘Emmy’s Rustic Run’ to be held Sept. 24

By Kim McDarison 

“Emmy’s Rustic Run,” a 5k trail run and day of family fun, will be held Saturday, Sept. 24, at the Fort Atkinson family farm of Russ and Angie Nathan, N580 Poeppel Road. 

Activities are slated between 8 a.m. and 1 p.m. 

Maternal grandparents of Emmalynn “Emmy” Liufau, the couple has for the past several years been hosting an event in support of finding a cure for a rare neurodegenerative disease called ataxia-telangiectasia or A-T. Emmy is one of between 400 and 500 children nationwide living with the condition, Emmy’s mother, Ashley Liufau, told Fort Atkinson Online last year in advance of the event. 

Last year, the event was well received, Ashley said recently, noting that the family was able to donate $131,000 to the A-T Children’s Project. 

Over the last eight years of fundraising, she said, the family — with help from those who have participated and supported Emmy’s Rustic Run — has raised more than $400,000 to help find a cure for the disease.  

Ashley, a native of Fort Atkinson, and her husband, Dave, are Fort Atkinson high school sweethearts. The couple has been married for 13 years and lives in Florida. The family includes two children: Emmy, 9, and her sister, Kate, 7. Each year, the family returns to Fort Atkinson to celebrate their extended family and work toward a cure for A-T. 

As reported by Fort Atkinson Online last year, according to the National Institute of Neurological Disorders and Stroke (NINDS) website, A-T is a rare, childhood, neurological disorder that causes degeneration in the part of the brain that controls motor movements and speech.  

“NINDS-supported researchers discovered the gene responsible for A-T, known as ATM (ataxia-telangiectasia mutated) in 1995. This gene makes a protein that activates many (probably more than 700) other proteins that control cell cycle, DNA repair, and cell death. Without it, cells are unable to activate the cellular checkpoints that protect against the damage of ionizing radiation and other agents that can harm DNA,” the website states. 

The disease causes a progressive loss of muscle control, immune system complications, and a high rate of cancer, which presents mainly as blood cancers such as leukemia and lymphoma, Ashley said.  

Children with A-T appear normal at birth, with early signs of the disease usually appearing during the second year of life. A degenerative disease, children with A-T typically find themselves dependent on wheelchairs by the age of 10, and find it difficult to read, speak and eat, Ashley added.  

Last year, Ashley reported, Emmy was struggling with basic tasks, such as walking, getting dressed, using silverware and writing utensils, getting up and down stairs, and even sitting upright for long periods of time. 

Updating Emmy’s condition, this year Ashley noted in a recent email, that “over the last 2 years, Emmy has unfortunately lost the ability to walk unassisted. She has also developed tremors and jerks that make seemingly easy tasks very difficult. She is constantly having to adapt and figure out how to accomplish tasks that most of us don’t even have to think twice about.” 

At school, she wrote, Emmy has a one-on-one aide who assists her with reading, writing, completing projects, and other daily tasks. 

“We are a very active family and love finding ways that we can keep Emmy included. Last year, we were able to get her fitted for a power wheelchair and she loves to cruise around the neighborhood,” Ashley wrote.  

Through it all, Ashley said last year, Emmy is “a kind and gentle spirit.” Even as she faces challenges, Emmy remains a “source of joy to everyone she meets.

“Her smile and laugh light up a room and she has helped us learn to appreciate the quieter, slower moments in life.”  

This year, Ashley noted: “Emmy is resilient and doesn’t give up easily. She rarely complains about her shortcomings and can often be found with a smile on her face. But despite these great personality traits, we would still love more than anything to find a cure for our girl. 

“The A-T Children’s Project is funding an exciting drug trial that has the potential to stop A-T and the effects it has on the body and we are anxiously awaiting to hear more about the findings. 

“Additionally, the A-TCP recently announced that they are collaborating with Charles River Lab, a drug development services company that has succeeded in developing a laboratory test or ‘assay’ to rapidly evaluate thousands of approved drugs to learn if some of them can be repurposed for A-T. Because drugs emerging from the screening process with promising results will have already been approved for other diseases, they should have a faster path to approval for treating A-T patients than a new drug would have. We are more hopeful than ever that a cure can and will be found for A-T.”  

Ashley said the family was made aware of Emmy’s condition even before she was symptomatic. 

“Her newborn screening came back with a red flag on her white blood cell count. The doctors couldn’t figure out what was causing her immunodeficiency, but we saw a geneticist when she was 6 months old and they ran a whole genome sequencing on her and it come back with her diagnosis of A-T.  

“We began really noticing her differences when she was about 3 or 4 years old,” Ashley recalled, noting that kids with A-T usually begin walking at a normal age, but often never leave the “toddler” stage. They sway and show signs of issues with coordination, she said.  

In addition to issues with muscle control, 70% of all A-T children are immunodeficient, Ashley said. 

Emmy is aware her body is changing, Ashley noted, describing her daughter as “a trooper.” 

As they wait for a cure, as a family, Ashley said: “We have faith in God’s plan for her and our family and have decided that we will live each day to its fullest. We also realize that the only way for a cure or life-improving treatments to be found is through fundraising efforts like ours. It is such a small percentage of the world’s population that is affected by A-T. The research that is happening is almost entirely thanks to the grassroots efforts of families like ours — these small-town fundraisers are making a big difference.”  

Describing the importance of Emmy’s Rustic Run, last year, Ashley told Fort Atkinson Online: “Our event is incredibly important to those who are affected by A-T. Because of its rarity, there is little to no federal funding for research on ataxia-telangiectasia and so it’s up to us and other A-T families to do what we can to assist the A-T Children’s Project in funding these projects.

“We also love hosting our event because it’s something our kids look forward to every year. ‘Emmy’s Run,’ as my girls call it, is a break from the normal routine and it’s a fun-filled day where Emmy gets to ‘be famous’ as she likes to say.  We have been touched by the outpouring of love from the community — both family and friends, and complete strangers that have stepped up to help us spread the word, find donations and raffle prizes, and get involved.” 

Ashley said that while Emmy’s Rustic Run is in its sixth year, the family has been involved with fundraising efforts for eight years. 

“Each and every year, we continue to be blown away by the support we receive. It is incredible to see what one small community can do when it rallies together,” she said. 

Emmy’s Rustic Run has traditionally featured “delicious food spreads,” Ashley said, and free kids activities, like bounce houses and a scavenger hunt in the woods.

This year, additional activities will include face painting, kids crafts and concession stands. 

“We strive every year to bring something new and exciting for all of our participants. We love hosting this event and hope that it will continue to be something the Fort Atkinson community can look forward to each fall,” she said. 

Describing some of the event’s more unique features, Ashley said: “The trail is handcrafted by my dad and it is truly a labor of love. The 5k run and one-mile walking courses have beautiful scenery changes and lots of surprises along the way … If your kids don’t leave completely content and exhausted, you just didn’t stay long enough.”  

This year’s plans for Emmy’s Rustic Run include: 

• Runner registration/packet pickup, 8 to 8:45 a.m.

• Pancake breakfast (included with registration), 8:30 to 11 a.m.

• 5k trail run kickoff, 9 a.m.

• 5k awards, 9:50 a.m.

• Kids races, 10 a.m.

• Approximately 1-mile walk in the woods and scavenger hunt, 10:30 a.m.

• Raffle winner announced and silent auction ends at noon. 

• Face painting, bounce houses, kids crafts, concessions, 9 a.m. to 1 p.m. 

Those interested in learning more about the event can visit Facebook @EmmysRusticRun.  Those looking to register for the run or walk can visit: www.ATCP.org/RusticRun. For further information, contact the organizers: EmmysRusticRun@gmail.com.