Community Impact

LIZ KENNERLY HED

Liz Kennerly Dek


Liz Kennerley wasn’t drawn to governmental advocacy. She says advocacy found her. Anybody who knows Liz knows that she is independent, tenacious and powerful. When you meet Liz, you quickly understand that while she battles Complex 1 mitochondrial disease, she is a powerful and well-known force in the halls of the United States Congress. It is not unusual to mention her name during a meeting in a congressional office and have the staff person say, “I know Liz; how is she?”

I first met Liz and her parents over dinner in Washington DC in 2012. It was the night before UMDF would hold its first Mitochondrial Disease Congressional Caucus briefing. We invited Liz to represent the patient community as a guest speaker. Liz knew that she would have about 20 minutes to talk about mitochondrial disease and how the disease impacts her. We knew there would be representatives from congressional offices in the audience, so we wanted to discuss her presentation. The next morning, when the time came for Liz to speak, she knocked it out of the park. We were all so proud of her.

Typically, when we conduct a briefing for Congress, we follow it up with a schedule of meetings in the House and Senate. Participants in UMDF’s Day on the Hill will tell you that these types of meetings require walking long distances. We also meet late into the day, so it can be tiring for a healthy person, let alone a person with an energy depleting illness. So I was quite surprised when, after her speech, Liz asked if she could tag along. I told her it would be a very long day, but Liz wouldn’t back down; she was up to the challenge. I was glad to have her along for the meetings.

Liz does not let her disease define her. Liz makes it very clear to everyone that she is independent and wants to remain that way. “I became a boarder at my high school in tenth grade. The school is closer to my house than our grocery store. My parents wanted me to, and I agreed, so we could have our own space,” Liz recalled. She chose to move out to assert her independence. “It’s hard to stop reflexively reminding another about doing their work, getting up on time, etc., if you’re sharing the same roof.”

After high school, Liz went even further away by accepting admission to Simmons University in Boston, which is about 300 miles from their home in Solebury, PA. “My parents and I joke that it’s far enough away that calling before visiting is necessary yet close enough to reach within hours in case of an emergency.” After earning her degree in Society & Health, Liz became a volunteer with a number of organizations. After those and other intern experiences, Liz went to work for BIO, the world’s largest biotechnology organization providing advocacy, business development and communications services for more than 1,200 members worldwide. She spent the next five years being the voice of patients like her on Capitol Hill. “During college, most of my Fridays were spent volunteering on a complex care inpatient unit at Boston Children’s Hospital, one of our country’s best children’s hospitals, so I know how a variety of health conditions and disparities impact the entire family and society at large,” Liz said.

It’s amazing to sit in a congressional office and watch Liz work her advocacy magic. She educates house and senate members about mitochondrial dysfunction and its links to well-known diseases and illnesses, such as Parkinson’s, cancer, obesity, cardiac issues, and ALS; she then digs deeper into mitochondrial disease and how it impacts her. Along with Complex I, Liz has dysautonomia, which has led to insomnia, GI trouble and the inability to regulate her blood pressure, heart rate and body temperature. She acknowledges that her motor skills aren’t great, but she chooses to emphasize that she lives positively with her disease. “Let’s say I live alone and can put groceries away, do laundry and make dinner,” she stresses. “I can also go downstairs to pick-up my mail and packages and write and ‘poke around’ on the piano. She also keeps her eyes set on federal health policy and how she works towards change.

“My current legislative priorities include keeping the ACA/Obamacare, Medical Foods Equity Act and Access to Precision Medicine Act,” Liz said. “The Medical Foods Bill will make it harder for health insurance companies to deny large quantities of medically necessary ’medical foods’, aka dietary supplements and vitamins many patients in our community rely on. The Access to Precision Medicine legislation makes Medicaid/Medicare cover various genetic testing to assist providers in the diagnostic odyssey.” She also hopes that incoming members of the House and Senate will be open-minded when it comes to the needs of the mitochondrial disease community.

Liz, who has been a tremendous asset to UMDF, sees herself working in the field of political advocacy for a patient advocacy group. But, she knows that whether it’s her in-person house and senate meetings, phone calls or persuasive writing, she can’t ‘fix the world’. She knows the only way to begin to fix things for the patient community is to enact effective federal health policy. “Sometimes, federal advocacy feels like talking to a wall,” she said. It’s a wall Liz Kennerley is determined to climb or knock down in order to make an impact that will benefit all members of the mitochondrial disease community and the rare disease community at large.

DEVIN SHUMAN HED

Devin Shuman Dek

Devin Shuman, 28, grew up with the United Mitochondrial Disease Foundation. As a teenager, she attended her first symposium in Chicago in 2011, just a year after getting her diagnosis of mitochondrial disease. The annual meeting was the place where she met her ‘mito family’, a family she holds close to her heart. It was also the meeting where she learned to manage her journey with mitochondrial disease.

“The validation, the tips/tricks and the energy I got from being part of such a fun group of people is what kept me going day to day,” Devin remembered. “I met the most incredible people that are so different from me on paper, yet mito allows us to ‘click’ instantly with lifelong friendships.”

Devin’s journey with mitochondrial disease started as an infant in the neonatal intensive care unit (NICU). Despite being born full term, she was the size of a premature baby. In middle school, Devin lost the ability to swim, run long distances and play sports. In high school, her illness kept her home from classes for a large part of the school year. Devin’s parents then realized that that it was possible that she too had mitochondrial disease.

During that time, her brother, Rees, was also experiencing the symptoms of mitochondrial disease. Testing would reveal that Rees was affected and he became the first person in the family with an official diagnosis. Devin’s parents now believed that it was possible that she too had mitochondrial disease.

“I forever owe my brother my life as, without his diagnostic odyssey, I am pretty sure I never would have found a diagnosis or even known something was wrong,” Devin said.

Being diagnosed with mitochondrial disease as teenager gave a younger Devin a unique perspective on her journey and on her future career.

“I always say that being diagnosed with mito as a teenager meant that right when I was figuring out what it meant to be myself, I was figuring out what it meant to have mito,” she said.

As she moved into college, she knew that she wanted work in the medical field in order to help others; but, she also understood that attempting to go to medical school would be a struggle due to her mitochondrial disease. That is why Devin was drawn to genetic counseling.

“It all just clicked,” Devin remembered. “This was a career where I could spend all day, every day, helping families understand genetics.”

Throughout college, Devin remained highly active with the UMDF and the friends she met along the way. Currently, she serves as a Support Ambassador. In this role, she helps connect patients to the tools and resources that she knows will help them on their own personal journey with mitochondrial disease. It’s a role she says is truly special.

“Everyone puts so much love and passion into their work with the UMDF, and the UMDF means so much to all of us that we barely even notice the work that we do,” Devin said.

As a Support Ambassador, Devin loves to take part in virtual meetings, especially those with the teens and young adults. She says she gets a powerful and indescribable feeling when she knows her help and information benefitted somebody else.

Devin gets the same gratification from her role as a genetic counselor. Since 2018, Devin has worked for High Risk Pregnancy Center in Las Vegas, Nevada.

“Being a genetic counselor with a genetic condition means that I will always go the extra mile for my patients,” Devin said. Her illness helps her appreciate the navigation that patient families undertake when it comes to communication with medical providers, insurance authorizations and getting answers to questions.

“Having mito means that all the ‘small tasks’ don’t feel small to me. Having mito means that when I say ‘I get it’ to a patient, they sense that I actually do,” Devin said “Work gets to be therapeutic during those times when I’d give anything to fly to Kansas and hug my friend who is in the ICU. I get to be there for my patients when it feels like I can’t be there for my friends. I get to take what I learn from work and help other mito families”. It’s this information, insight and empathy that she uses as a Support Ambassador for the mitochondrial disease community.

Devin describes her journey with mitochondrial disease with one word – luck.

“I am lucky I had an older brother to lead the way. I am lucky that we connected with doctors so fast in that first year of diagnosis and that my blood work came back with easy to read, clear indications of mito,” Devin said. She is also grateful that she found the UMDF which allowed her to connect with others facing similar challenges. “Those bonds mean that my journey with mito isn’t so much a journey of illness but a journey of community and friendship.”

DAVID BROOKS HED

David Brooks Dek

David Brooks, 17, loves being amongst his peers and never lets mitochondrial disease get in the way. His mom, Lisa, remembers a time when David was younger. He would watch other boys play basketball hoping to be invited onto the court to play. “He would frequently drive up in his power chair, but the kids usually didn’t understand,” she recalls. All of that would change for the Upper Arlington, OH, teen in 2020.

As an infant, David was diagnosed with spastic quadriplegia cerebral palsy. At age two, he started having seizures. His doctors were perplexed, because it didn’t seem like typical cerebral palsy. When he was five, after contracting a stomach bug and spending several days in the hospital with fatally low blood sugars and high carbon dioxide levels, the doctors mentioned he may have a metabolic disorder. At that point, Lisa and her husband, Chris, took David to a mitochondrial disease expert, who diagnosed David with Complex I and Complex III mitochondrial encephalomyopathy.

“David’s mitochondrial disorder currently affects his muscles, brain, speech, heart, GI tract, kidneys, and bladder,” Lisa said. “What his mitochondrial disease does not affect is his positive personality and loving, strong spirit.”

In 2016, the Brooks had to put life on hold while David had spinal fusion surgery to correct severe curvature in his spine.

“David’s back had become so rounded that his stomach was pushed up into his lungs, and breathing was becoming an issue,” Lisa said. Complications with the surgery caused tingling in his legs, and he was now at risk of losing all sensation and function from the waist down.

In February 2017, David had a second spinal fusion surgery to correct the pinching of his spinal cord. “The doctors did correct that but, unfortunately, made some critically poor decisions that resulted in a 90 degree curve in his spine; his chin stuck on his chest, and he developed a pressure sore on his back due to the large hump created by the fusion,” Lisa said. A third fusion surgery was now needed.

In September 2017, David underwent the last spinal fusion. There were complications and another surgery was required. A third surgery was successful, but left David unable to breathe on his own and unable to keep down food. David became very malnourished and was placed on TPN, a form of IV nutrition with a central line to the heart. He also developed additional complications from the spinal fusion surgery that caused an infection. This setback left David in a special bed for over a year. David can now breathe independently and no longer needs TPN, but he still struggles with pressure sores and almost daily dry heaving.

After returning to school last year, David’s desire to be involved in sports grew stronger. His cousin reached out to the principal and athletic director, who both encouraged David to join any high school team that he would like. David chose football.

“The coach invited us to be introduced to the team, and they gave David fist bumps as a greeting,” Lisa said. “Prior to their game against their biggest rival, we presented David’s story to the team. After hearing his story, they beat their rival for the first time in 12 years,” Lisa said. The team embraced David, and he became their good luck charm. “Before every game, the players began saying ‘hi’ to their buddy, David, in the hall, searching him out for good luck fist bumps before the game,” Lisa said. “David has never been so immersed in the school experience and embraced by the students.”

During the season, Lisa and David gave ‘pep talks’ to the football team on a weekly basis. The talks, entitled, ‘David Brooks’ Life Lesson’, addressed issues confronting people with disabilities, things the players have in common with those with disabilities, how preparing for a game is much like preparing for surgery, and how having a purpose gives you strength. They have created ‘Give Me Rocks’ t-shirts to raise awareness that people with disabilities want to be a part of sports teams. Lisa said that many of the boys believe David is the toughest kid in school.

“Even during COVID, the boys came by for window visits before their games. We text back and forth, and the boys say they are giving 110% for David at each and every Friday night game,” Lisa said.

Lisa said David also benefitted from being part of the team. “He gained more of a social connection and confidence. He really was embraced by the community,” she said. In fact, at the football banquet when the coach announced him, David received a standing ovation.

Currently, David is confined to bed again but faces his challenges with a bright, strong, positive spirit. “My hope for him would be that he heals and achieves physical comfort so he can enjoy life, friendships and adventures outside the home,” Lisa said. “I wouldn’t trade him for anything in the entire world!”

UMDF Awards 2020

Each year, the United Mitochondrial Disease Foundation recognizes and honors volunteers for their dedication and support of the UMDF mission. In 2020, as part of Power Surge, UMDF’s annual symposium turned virtual, and four awardees were honored during special, video interviews.

Energy Award

The UMDF Energy Award recognizes a person who embodies the spirt of UMDF through the use of their time, talents, advocacy efforts, and fundraising. The 2020 recipient of the Energy Award is Ryan Eberly of Gordonville, PA. Ryan uses his talents to help UMDF with a number of technical and web related issues. Most recently, Ryan served as a tester for the new UMDF website, assisting us in making the decisions that enable the website to be more user-friendly.

Heartstrings Award

Nathanial Pakuris from North Kingstown, RI, was recognized with the 2020 Heartstrings Award. The award is presented to a child or teen who has donated or raised funds for the UMDF, or has ’tugged at the heartstrings’ through his or her generosity. Nathanial participated in a program at his school that matched students with special needs students. Nathaniel was matched with Michael LoPresti. Michael is a young mito warrior who attended school with Nathaniel. The two became friends. Nathaniel created a lemonade stand to raise funds for UMDF in honor of Michael. Thinking he would raise $25, Nathaniel’s lemonade stand raised ___. “I saw a chance to help somebody, and I took it,” Nathaniel said.

LEAP Award

The LEAP Award was presented to the Holmes Family of South Bend, IN. LEAP stands for Living, Encouraging, Achieving & Persisting and is awarded to those living positively with mitochondrial disease in their community, highlighting the person’s accomplishments and volunteer service. Melody, Stephen and Natalie Holmes received the award for their advocacy work on both the state and national level. The Holmes family first became advocates for patient families in 2009 and have participated in multiple state and national advocacy events annually.

Leadership Award

In 2020, Joy Krumdiack of Bellingham, WA, was awarded the Stanley A. Davis Leadership Award. Joy Served as the Co-chair of the Adult Advisory Council Team (AACT) and has helped countless patient families in her role as a Support Ambassador. She exemplifies the criteria of the UMDF’s most prestigious award, which was named after a former Chairman of the Board of Trustees who died in 2008. The award is presented to a person who mirrors Davis’ dedication and service to the UMDF.