Lake Zurich woman's charity gives voice to those with rare diseases

  • When Kerry Hughes, left, discovered the stories of people fighting rare diseases, the Lake Zurich woman started a charity to help them tell those stories. Palatine's Adrienne Provost, right, says it is empowering to share the story of her daughter's rare and painful skin condition.

    When Kerry Hughes, left, discovered the stories of people fighting rare diseases, the Lake Zurich woman started a charity to help them tell those stories. Palatine's Adrienne Provost, right, says it is empowering to share the story of her daughter's rare and painful skin condition. Steve Lundy | Staff Photographer

  • As a Rare Storyteller with Harmony 4 Hope, Paul Braker tells aspiring medical students about the rare autoimmune disease that left his wife unresponsive for months. Last week, April Braker, while still unable to talk, recognized her husband.

    As a Rare Storyteller with Harmony 4 Hope, Paul Braker tells aspiring medical students about the rare autoimmune disease that left his wife unresponsive for months. Last week, April Braker, while still unable to talk, recognized her husband. Steve Lundy | Staff Photographer

  • At the end of some Harmony 4 Hope conferences, Peter Dankelson of Libertyville jumps on his guitar. The 18-year-old, born with a rare disease that causes facial defects, has endured 30 surgeries to make it easier for him to eat, see and hear.

    At the end of some Harmony 4 Hope conferences, Peter Dankelson of Libertyville jumps on his guitar. The 18-year-old, born with a rare disease that causes facial defects, has endured 30 surgeries to make it easier for him to eat, see and hear. Courtesy of Dankelson Family

 
 
Updated 10/27/2018 4:21 PM

With her Harmony 4 Hope charity, Lake Zurich's Kerry Hughes gives people with rare diseases more than a voice.

"It's such an empowering experience in an otherwise powerless situation," says Hughes, 47, who has built a collection of people who hit the road to explain rare diseases to doctors, medical students and others. The outgoing and vivacious Hughes says her passion was inspired by the young daughter of a friend.

 

That girl had Batten disease, a rare, inherited disorder of the nervous system. Resulting in a cascade of health problems, Batten disease turns a seemingly healthy child into one who is blind, bedridden, unable to communicate and robbed of all cognitive functions before death. Most people have never heard of Batten disease or any of the other ailments that are too rare to generate much awareness. That led Hughes to do research.

"I discovered that there are 350 million people worldwide who are impacted collectively by 7,000 rare diseases. Half of those people are children, and 35 percent of those children won't live to see their fifth birthday," says Hughes, who adds that her friend's daughter died last year at age 12. "When I learned those statistics I was just slack-jawed, and I really truly felt compelled to do something to bring awareness to this cause."

Embracing her love of music, Hughes helped organize concerts and events to raise funds for research after learning about her friend's daughter in 2009. By 2014, she had established the Harmony 4 Hope (harmony4hope.org) tax-exempt charity, which brings attention to ailments from autoimmune encephalitis to Zellweger Spectrum Disorder.

"Families are wanting to tell their stories. We're trying to create a team of people telling these stories," Hughes says, noting that she has about 20 speakers in the stable, as well as singer-songwriter Trapper Schoepp. They've presented at Chicago's Rush University and Northwestern's Feinberg School of Medicine, Marquette University and the Medical School of Wisconsin.

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"There's that sense of 'I'm doing something proactive,'" says Adrienne Provost, 51, of Palatine, who has found a voice through Harmony 4 Hope to speak out on behalf of her daughter, Caroline, who has a rare and painful skin disorder called epidermolysis bullosa. "So much of living with a rare disease is having things happen to you. I'm getting the opportunity to speak for the whole community."

Quick with a smile, Caroline Provost, 13, says she is happy that her mother is one of the storytellers explaining rare dieseases, such as epidermolysis bullosa, an incurable skin condition that causes her daily pain.
Quick with a smile, Caroline Provost, 13, says she is happy that her mother is one of the storytellers explaining rare dieseases, such as epidermolysis bullosa, an incurable skin condition that causes her daily pain. - Courtesy of Provost family

Caroline, 13, a seventh-grader at Sundling Junior High in Palatine, spends at least two hours every night tending to her damaged skin, which rips and blisters at the slightest touch. While she prefers to avoid the spotlight, Caroline says she is happy that her mom has shared her story with medical students and with federal legislators during a lobbying trip last year to Washington.

"I like it because then I feel people understand what it feels like to live with EB and know who I am," says Caroline, who aspires to be healthy enough someday to swim, ride a bicycle and go on a sleepover.

                                                                                                                                                                                                                       
 

"It's an education that isn't covered in their curriculum," Adrienne Provost says. She and Hughes drive to so many places to give talks that they call themselves "Thelma and Louise." The speakers share a bond through their common experiences.

What started with a common interest in rare diseases has blossomed into a friendship for Harmony 4 Hope founder Kerry Hughes, left, of Lake Zurich and one of her Rare Storytellers, Adrienne Provost of Palatine.
What started with a common interest in rare diseases has blossomed into a friendship for Harmony 4 Hope founder Kerry Hughes, left, of Lake Zurich and one of her Rare Storytellers, Adrienne Provost of Palatine. - Steve Lundy | Staff Photographer

"Their stories are moving. Medical students will cry," Hughes says of her speakers.

"They pay attention. That's for sure," says Paul Braker of Schaumburg, who told Feinberg medical students this week about the rare disease that caused his wife's immune system to attack her brain and leave her unresponsive for months. Just in the last week, April Braker recovered enough to recognize her husband, who knows that her autoimmune disease often is misdiagnosed by doctors as a mental illness.

"The kind of advocacy (Harmony 4 Hope) is doing is important," Braker says.

Some of those patients are transitioning into storytellers.

"Not only is it about talking about rare diseases and educating people; it also involves music," says Peter Dankelson, 18, a Libertyville High School senior who has blossomed into an accomplished guitar player to go along with his public speaking. Born with Goldenhar Syndrome, which causes malformations in the face, he has had 30 surgeries to improve his vision, hearing and ability to breathe, chew and swallow.

As one of the speakers for Harmony 4 Hope, Peter Dankelson of Libertyville explains how he was born with a rare condition that has led to 30 surgeries to make it easier for him to eat, see and hear. Dandelson, a senior at Libertyville High School, plays his guitar at some venues.
As one of the speakers for Harmony 4 Hope, Peter Dankelson of Libertyville explains how he was born with a rare condition that has led to 30 surgeries to make it easier for him to eat, see and hear. Dandelson, a senior at Libertyville High School, plays his guitar at some venues. - Courtesy of Dankelson Family

Dankelson, whose website is petesdiary.com, has promoted #ChooseKIND at schools around the country and connected with more than 25,000 students. He often ends Harmony 4 Hope sessions by playing his guitar alongside professional musician Schoepp, who joined Hughes' efforts from the start.

"Kerry is one of the most motivated people I know and has a heart of gold," says Schoepp, 28. "She reached out to me five years ago to do a gig and we haven't looked back since."

Schoepp doesn't begin to compare himself to children with rare diseases, but as an accident-prone child who "spent a fair amount of time in hospitals" and had chronic back pain and surgery, he can empathize. "While my songs and stories are rooted in pain, there is a bright light within them that helps," the Milwaukee-based artist says.

The upbeat Hughes says "the magic of networking" has allowed Harmony 4 Hope to donate nearly $20,000 to research projects through Rush University, present $500 scholarships to help medical students travel to conferences to learn about rare diseases, and give iPods loaded with music to young patients.

"Throughout the year, folks can help us curate The H4H Rare Playlist by tweeting their song requests to us @harmonize4hope," says Hughes, who publishes them on Spotify every Feb. 28, Rare Disease Day.

Inspired by a friend whose daughter died of a rare disease, Kerry Hughes of Lake Zurich founded Harmony 4 Hope. Her charity features 20 speakers and musicians to raise funding and awareness for rare diseases.
Inspired by a friend whose daughter died of a rare disease, Kerry Hughes of Lake Zurich founded Harmony 4 Hope. Her charity features 20 speakers and musicians to raise funding and awareness for rare diseases. - Courtesy of Harmony 4 Hope

In her search for corporate sponsors, Hughes landed financial support from Retrophin, a biopharmaceutical company in San Diego that focuses on treatments for people with rare diseases. The former teacher at Grove Avenue Elementary School in Barrington also has the full support of her husband, Dave, and their children, Nathan, 19, and Olivia, 16.

The H4H Rare Storyteller Series continues Tuesday with a presentation at Rush University Medical Center in Chicago, and Hughes has more events already on her 2019 calendar.

"She really has no vested interest other than the spirit in her heart," Rare Storyteller Provost says of Hughes.

"It's very inspirational," Hughes says of seeing this diverse group of people come together for a common cause. "I've learned a lot about life from these people."

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