Karen Fernbaugh Roy, LCSW
BetterCaths Legislation Honoree, Catheter User
Karen is a Licensed Clinical Social Worker, homecare professional, paraplegic, mom of three, and a bladder cancer survivor. She works tirelessly to advance healthcare access and health equity for people with disabilities, and served as the 2018 Ms. Wheelchair America.
The BetterCaths legislative initiative was established in Karen's honor.
She says "I was diagnosed with bladder cancer by chance. While I was having a kidney stone removed in October 2021, my doctor noticed a tumor on my bladder wall. It turned out to be stage I, high-grade urothelial cancer, a type of bladder cancer. I was shocked."
"There was no genetic link. And, I’d had no symptoms," she adds.
Jenn Wolff, OT
BetterCaths co-Founder, Catheter User
An Iowa native, and nationally-recognized disability advocate, Jenn worked as an Occupational Therapist for nearly a decade.
Jenn was paralyzed during an operation to remove a cancerous tumor from her spine.
After her paralysis, Jenn began advocating for health equity & disability justice. She has guided the Backbones SCI Leader Program, led national grassroots advocacy for United Spinal, advocated for disability rights multiple times on Capitol Hill, and created Upgrade Medicaid in Iowa.
"It’s time for healthcare corporations to take responsibility over the medical equipment and supplies they provide to Americans --
especially Black and Brown, low income, and disabled communities," Jenn emphasizes.
BetterCaths co-Founder, Caregiver
A health education professional and homecare executive, Lisa is the creator of the DEHP education movement for the disability community. She has lobbied on Capitol Hill multiple times to advance disability rights and healthcare legislation.
Lisa teaches and consults nationwide on the topics of disability support programs and healthcare marketing. She also launched two of the world's largest social communities (at the time) for SCI peer support, LASCI and Wheel:Life.
"When I was 27, my father asked me to help him end his six-year battle with cancer
after it invaded his spine and spread throughout his body. Signing papers to end his life support was the hardest thing I've ever had to do," Lisa shares.
"I hope this effort saves another family from experiencing the same heartbreak."
BetterCaths co-Founder, Spaulding Rehab Peer Counselor, DME Professional, Catheter User
A New England native, Chris Collin was paralyzed in a 2008 motorcycle accident. He has lobbied on Capitol Hill for disability rights and healthcare access, and is a familiar face at the Abilities Expo. His DME career allows him to help wheelchair users get mobility equipment they need.
Chris is a PSIA-certified mono-ski instructor and also enjoys handcycling or exploring Maine backroads on his Can-Am Spyder. He volunteers with disabled support groups and frequently speaks at rehab hospitals nationwide.
"Without catheters, my body won't function properly," Chris explains. "Because I need to use them, I want to know what's going in my body. I don’t want to become a statistic, or someone who dies younger than they have to, because of long-term exposure to a cancer-causing chemical in my catheter or any invasive medical product."
BetterCaths co-Founder, TIRR Peer Counselor, Able Outdoors co-Founder, Catheter User
An accomplished outdoorsman, this Texas native leads accessible hunting and fishing trips for people who are newly paralyzed. For 20+ years, Chad has also supported patients as an SCI peer counselor at TIRR Memorial Hermann.
"Nearly everyone who uses a wheelchair,
and is over the age of 40, knows someone in our community who's had bladder cancer or died from it," Chad explains.
He asks, "Why don't our urologists and medical supply providers tell us if our catheter has a cancer warning label, before we use it? Their failure to inform doesn't seem ethical or responsible."
"I have a better idea. Let's ban healthcare providers from prescribing and selling catheters that are made with cancer-causing chemicals. Let's hold them accountable," he says with a smile.
The Better Caths for Iowa Act
Sponsored by Iowa State Senator Josh Turek - (D)
Born with Spina Bifida, Josh is a four-time Paralympian, most recently bringing home Gold from the 2020 Tokyo Paralymics. He the first person who uses a wheelchair to be elected to the Iowa State Legislature.
"Bladder cancer took the life of Dale Ericksen, my wheelchair basketball coach at Southwestern Minnesota State University," Josh shares.
"I introduced this bill to improve health equity for Iowans with disabilities," he adds. "I encourage state and federal representatives, nationwide, to introduce similar legislation."
The BetterCaths for Iowa Act places an immediate ban on reimbursement of catheters that have Prop 65 carcinogen warning labels. It also requires Iowa Medicaid to review the historical bladder cancer rate and correlating brands of catheters used by their patients.
It's time to get involved.
Support Josh's legislative bill as he strives to protect
Iowans who have disabilities!
The Iowa Chapter of United Spinal Association strives to CONNECT individuals impacted by spinal cord injuries or disorders, including families, caregivers, and professionals. Their members EMPOWER each other to ENGAGE in active and healthy lifestyles.
Since its founding in 2005, the Iowa Chapter has grown the number of services it offers. Its volunteer Board of Directors is primarily led by people who have a SCI/D. With strong support and a growing membership, the Iowa chapter has a bright future. It remains dedicated to helping Iowans living with a SCI/D have fulfilling, active lives.
The Greater Boston Chapter of United Spinal Association is comprised of individuals affected by a spinal cord injury or disorders (SCI/D), including family members, loved ones, healthcare associates and many more.
From the moment of injury, they offer hope via 1:1 support, understanding, and guidance, striving to Reach, Inspire, Support and Empower (RISE) all those affected by an SCI/D through their nationally-recognized Peer Visitation Program. GBC has two locations at New England Rehabilitation & Spaulding Rehabilitation Hospitals.
Iowa’s Developmental Disabilities Council (DD Council) was created in response to a federal law -- the Developmental Disabilities Assistance and Bill of Rights Act.
DD Council is a federally funded state agency that advocates for the development of services and supports so Iowans with developmental disabilities can make choices and take control of their lives.
The Council represents Iowans with disabilities, family members, service providers, state agencies, and organizations concerned with developmental disability issues.
The United Spinal Association of Houston is committed to reimagining life with a disability and redefining it through unique services and programs. The many faces of their Houston-based network include individuals living with disability, caregivers, hospitals and healthcare professionals, DME manufacturers and suppliers, and a multitude of other highly dedicated partner organizations.
They establish and promote community programs including, but not limited to, support groups, medical supply assistance, and life skills training, to build new purpose and meaning to life after disability.
United Spinal of Houston stands strong and drives action, locally and nationally, to ensure access and equality for the entire disability community.
The Western New York Chapter of United Spinal Association's mission is to inspire those with spinal cord injuries to rise above their challenges by promoting physical independence; and providing emotional support and spiritual healing to foster hope for a successful and fulfilling life.
Their vision is to provide a place for people to come to recover after a life-changing spinal cord injury. The group never stops moving forward to bring the best outcomes for individuals who are progressing through their journey toward recovery.
Founded in 2014, SCI Peer Support USA serves nearly 16,000 members every day through its' private Facebook group.
They represent the largest SCI network on social media in the world, helping members connect with new friends while better understanding spinal cord injury and ways to find more lifestyle support.
Motion Project inspires those with spinal cord injuries to rise above their challenges by promoting physical independence; and providing emotional support and spiritual healing to foster hope for a successful and fulfilling life.
Providing state-of-the-art equipment, exceptionally trained therapists, research, care navigation, advocacy and support, the foundation manages the Natalie Barnhard Center for SCI Rehabilitation and Recovery in Buffalo, NY.
MPF has funded over $300K in Quality of Life Grants for others living with spinal cord injuries.
Disability Advocate, Attorney, SCI Researcher, Community Leader
At age 18, shortly after completing high school, Linda Norah-Davis learned she had a spinal cord tumor which resulted in a spinal cord injury. She went on to graduate from the University of New Orleans, where she majored in political science.
Linda attended law school at South Texas College of Law, and has practiced law for 36 years. Today, she serves as the Director of Advocacy for the Houston Chapter of United Spinal Association.
Linda also actively participates in SCI research at TIRR Memorial Hermann -- she understands how these studies are beneficial for patients.
Since 2014, she has served as as a community advisor on a number of research studies at TIRR Memorial Hermann, including a role as peer facilitator of a psychological health promotion study for women with spinal cord injuries.
"I would like to see DEHP banned in catheters to help people with SCI live longer lives," she explains. Linda also hopes that one of the positive outcomes of the BetterCaths health advocacy initiative will be to "promote more spending toward SCI research."
Rehabilitation Center Founder, United Spinal Chapter Leader, Catheter User
When she was 24, Natalie was working as a physical therapist assistant when a 600-pound exercise weight machine fell on top of her. Her prognosis after the accident? Quadriplegic.
Natalie created the Motion Project Foundation as a 501(c)3 nonprofit in 2008. Since then, MPF has funded over $300K in Quality of Life Grants for others living with spinal cord injuries. In 2021, the Motion Project successfully opened the Natalie Barnhard SCI Rehabilitation and Recovery Center in Western New York.
In 2021, United Spinal Association also bestowed her with the Finn Bullers Advocate of the Year Award. Natalie founded and leads their Western NY chapter. She says, "I have met with my state representatives during Roll on Capitol Hill for many years and will continue to do so."
"I am supporting BetterCaths so everyone can feel free and confident using medical supplies that do not have cancer warning labels," Natalie explains.
"Toxic chemicals should not be in the medical products that we have no choice but to use."
Disability Advocate, Adaptive Sports Organizer, Catheter User
Gloria is the Founder & Executive Director for Bee Abled. Bee Abled's mission is to create and advocate for an adaptive community where the differently abled work towards achieving their fitness goals.
Bee Abled empowers people of all ages and abilities to participate in mainstream athletics to promote personal achievement, enhanced self-esteem, and lower barriers to living a fulfilling life. Gloria says, "We offer an outlet for all abilities & all ages to continue playing sports both competitively and recreationally through diverse programs."
She is actively supporting the BetterCaths initiative because she is concerned about the health risks of DEHP in urinary catheters. "Applying better policies and tactics to improve the safety of catheters is extremely beneficial for those of us who use them. A ban on DEHP in urinary catheters can help reduce the risk of life-threatening health issues, and provide a better quality of life for all of us who self-cath."
Disability Advocate, Mom of Twins,
Documentary Star, Entrepreneur, Catheter User
You may be familiar with Dani as the co-producer from the award-winning documentary film, Dani’s Twins. This film was created to focus on disability, pregnancy, adaptive parenthood, and normalizing disability, capturing Dani's pregnancy journey.
An active mom of beautiful twin girls,
Dani is the United Spinal Association of Virginia Chapter Advocacy Coordinator, founder of Access Social, a disability lifestyle and culture blogger, and creator of Quad Squad, a private Facebook support group for quadriplegic women.
"I support the BetterCaths initiative because I believe in transparency and cancer prevention," Dani shares. "I am deeply involved in advocacy at the grassroots-level locally and nationally through United Spinal and other networks."
"We have enough health concerns as it stands," she continues. "Preventable exposure to known causes of illness is of the utmost importance to people already living with disabilities."
Disability Advocate, SCI Peer Support USA Community Organizer, Catheter User
You may not know Jay, but if you have an SCI, you most likely have visited his online communities.
In 2014, this North Carolina native created
the largest spinal cord injury support network on Facebook today called Spinal Cord Peer Support USA. Over 15,000 members strong, the SCPS USA network is on Facebook, Instagram, Pinterest and YouTube. Jay also manages the largest used adaptive equipment emporium on Facebook called Disability Trading Zone.
Supporting SCI survivors and their wide range of lifestyle pursuits is Jay's passion and his ultimate goal in being part of the BetterCaths initiative too.
"After all my years of self-cathing, why am I just now finding out that some of the catheters I've used (and my community still uses) have cancer-causing chemical warning labels?"
Jay adds, "DEHP is harmful to humans and we need it banned in the medical devices we use!"
Disability Advocate, Wheelchair Athlete, Social Entrepreneur, Catheter User
For more than 20 years, Erik Kondo has excelled in our community as a business creator, product innovator, disability advocate, and adaptive athlete.
A Massachusetts resident, Erik's impact on the disability community extends nationwide. Active in networking people with spinal cord injury while he designs new concepts for assistive technology, he has led several SCI peer support communities that meet online and in-person.
Erik is the recipient of the 2022 United Spinal Strong Wheeled Together award.
Erik has joined the BetterCaths advocacy team to help educate his community because he strongly believes, "any substance, such as DEHP, that has been shown to be detrimental to human health has no place in medical supplies."
"Access to safe and effective healthcare is a human right and needs to be supported," he explains.
Disability Advocate, Legislative Activist, Peer Support Leader, Transverse Myelitis Fighter
Kim has been an active advocate for disability rights for many years, both on a local and national level. She has Transverse Myelitis, drives an accessible vehicle, uses a power chair, and travels often with airlines, so she understands the needs of the disability community intimately.
She also understands that there is a lot to be done, and we’re the best advocates in the position to make positive change.
In 2012, thanks to Kim's selfless advocacy work, the state of Georgia passed the resolution to make February 15th Transverse Myelitis Awareness Day.
"Being part of the Rolling Revolution, it's our responsibility to ensure we are all living safe and healthy lives," Kim shares.
"I support getting DEHP out of catheters. It's dangerous, unhealthy and that chemical causes cancer," she adds. "The cost savings alone in lowering cancer rates for catheter users should be enough to support this legislative measure."
Accessible Vehicle Professional, Disability Advocate, Hand Cyclist, Catheter User
Do you recognize Adam from his handcycling trip across America? In 2022, he rode across the country to raise awareness for people with disabilities and United Spinal Association.
Adam's career allows him to help wheelchair users get the accessible vehicles they need. He is also a certified Yoga instructor.
"I have been involved in chapter leadership for United Spinal Association for 15 years," Adam shares. "I also won individual advocate of the year in 2016, awarded by The Whole Person nonprofit organization in Missouri."
Adam has long been frustrated with limited access to quality catheters. "It is too difficult to get a product that works best and is safer," he explains.
"DEHP is a known carcinogen and the fact that it is still used in catheters is frightening to me," he adds. I want DEHP banned to help protect people who have to insert catheters into their body 4-8 times a day."
Disability Advocate, Wheelchair Traveler, New Mobility Contributing Writer, Catheter User
Ashley was paralyzed in a car accident when she was 14. After graduating with honors from the University of Southern California, she created WheelchairTraveling.com as an accessible travel resource for her community.
Ashley is featured in the Smithsonian Museum’s “Our Places” exhibit for her contributions to outdoor accessibility, which includes the Access 2 Parks Project she started in 2015.
She frequently advocates for better access and opportunities for people with disabilities, and has led workshops at the Abilities Expo and in conferences around the world.
Ashley wants DEHP banned from being used in catheters to prevent "unwanted, harmful chemicals in my body or [those of my] friends and family."
She says that, as a person with a disability, "being forced to ingest [or use products with] toxic chemicals is criminal."
Disability Advocate, YouTube Star, Reeve Foundation Peer Mentor, Catheter User
Mason Ellis is a go-getter, plain and simple. Creating content to help people with SCI, his YouTube channel has >7,000 subscribers.
A dedicated SCI mentor for the Christopher Reeve Foundation Peer and Family Mentor Program, Mason wants to help people with disabilities to live boundless lives. He is also establishing Indiana’s first chapter for the United Spinal Association.
Mason says, "I am supporting the BetterCaths initiative because I believe people with disabilities should not use invasive medical devices made with harmful chemicals."
"If we aren't educated by our Urologists or
Medical Suppliers about product warning labels, how do we have a fair, informed choice," he asks?
"DEHP should be banned in catheters because scientific evidence proves DEHP has toxic effects on the testicles, fertility, and kidneys, and it is also proven to cause cancer," he states.
Disability Advocate, Community Leader, Able Outdoors co-Founder, Catheter User
A lifelong Wyoming native, Ashlee was paralyzed in a ranching accident as a teenager. She went through physical therapy, and obtained a college degree in public affairs and civic leadership. She considered attending law school but instead got a master’s degree in Biblical counseling.
Ashlee served as Ms. Wheelchair USA in 2013.
A leader in the accessible outdoors movement, Ashlee has served on the National Shooting Sports Foundation’s Committee for People with Disabilities, and was awarded the Safari Club's Pathfinder Award. She also was named Wyoming's first game commissioner to use a wheelchair.
"It's important to be a voice for those who can’t speak up," Ashlee says. "Living with a disability brings enough medical challenges. Worrying about the chemicals in your catheters shouldn’t be another thing jeopardizing your health."