Navigating a chronic disease, especially a rare one, can be difficult, as there are often many choices that must be made when it comes to treatments, therapy options, medical guidance, education and more. But thanks to funding provided by Community Health Charities of Nebraska (CHC-NE) donors, families can receive crucial support from a care center that specifically works with their condition, giving them access to support in a variety of areas and helping them make decisions.
Diane Mouchka was originally diagnosed with carpal tunnel syndrome, but when none of the traditional surgeries and treatments helped, she was referred to the ALS Association Certified Treatment Center of Excellence at Nebraska Medicine. There, she received a diagnosis much more serious: She had ALS. Since her diagnosis, Mouchka has utilized services from several agencies and continues to attend the clinic regularly. “They are extremely helpful. The lift chair they provided me with has been a godsend to me. Some of the tools they sent me have made my everyday life a little easier,” she said.
The ALS Association Mid-America Chapter partners with Nebraska Medicine on a multidisciplinary clinic. It has been certified as an ALS Association Certified Treatment Center of Excellence and meets three times monthly. It is a unique clinic in that the patient sees a multitude of professionals all in one visit, including a neurologist, physical therapist, occupational therapist, speech therapist, nutritionist, respiratory therapist and social worker. “This reduces fatigue for the patient and burnout for the caregiver only having to make one trip three to four times a year, rather than multiple trips throughout the year,” said Sherrie Hanneman, Director of Communications for the Mid-America Chapter. “This also allows for all questions and concerns to be addressed at one time.”
The ALS Association began its partnership with Nebraska Medicine in 2007. In 2014, Nebraska Medicine received certification as an ALS Association Certified Treatment Center of Excellence, and it is the only ALS Association certified treatment center in Nebraska, which means it has passed a rigorous certification process that includes peer review and is subject to re-certification annually. The clinic is accessible to anyone living with ALS, and dollars raised in Nebraska are used to directly support the clinic. The ALS Association and The Mid-America Chapter both provide financial support to Nebraska Medicine to ensure a high quality of care is maintained at all times, which is important to patients. “Even with the new therapy, Radicava, ALS patients do not have many drugs or therapies to help slow the progression of the disease. Research has shown that regular attendance at an ALS-specific multidisciplinary clinic increases both longevity and quality of life,” Hanneman said.
Jay and Jacki Peterson travel to the clinic from Marquette. “One trip just two hours from home makes this cost-effective. We accomplish multiple checkups in one appointment, which efficiently uses time and energy for Jay. We feel it is beneficial to us to have the expertise of the same members of a team working with us each visit," they said. "We are impressed with the whole process and all the caring individuals we come in contact with. The quick response between professionals either by email or phone in between visits gives us security that we are not alone in our journey.”
Those who are dealing with hemophilia, a rare genetic disease, rely on the Hemophilia Treatment Center (HTC), which is housed at both Children’s Hospital and Medical Center and Nebraska Medicine. The treatment center offers crucial support for those with a bleeding disorder, as this type of condition requires more medical support than just seeing a specialist/hematologist once a year. “The HTC works with individuals and families across the state to ensure they are getting proper care in the clinic, followed by physical and occupational therapy, social workers and other specialists as needed, such as dentists,” said Maureen Grace, Executive Director of the Nebraska Chapter of the National Hemophilia Foundation (NHF).
Additionally, the HTC works with the NHF to refer those affected by bleeding disorders to the local chapter, which provides programming and education opportunities to better equip families who are dealing with a rare disease. This includes important skills like how to work with specialty pharmacies, how to pick the right insurance coverage and how to self infuse your factor from a young age, Grace said. “We also work with families with teenagers in how to transition to self care and being a responsible patient with the best outcomes as possible. Nebraska NHF works with HTC doctors and staff to ensure our education and guidance is in line with best practices and up-to-date research.”
While the HTC serves those with bleeding disorders throughout the entire state of Nebraska, most patients have to travel to Omaha at least once per year for their comprehensive clinics with their hematologists, Grace said. But NHF, along with the HTC, is working harder than ever to ensure there’s programming, outreach and education throughout the entire state of Nebraska. “Bleeding disorders are rare and the community is extremely small in rural areas of the state, but we want to make sure everyone in Nebraska has access to care and is supported by both the chapter and the HTC.”
CHC-NE donors make this support possible. “We host a large education conference in May in eastern Nebraska and an education day in central Nebraska in August. The support we get through CHC-NE allows us to offer these education sessions and a multitude of other programs for those with bleeding disorders throughout the state,” Grace said. “Hemophilia is a very expensive and potentially debilitating disorder. NHF creates a place of support, assistance and community for those living with this genetic disorder that currently has no cure. We count on our community’s support to help us to grow and bring more awareness, research and help to those who need it.”
Those who have cystic fibrosis (CF), another rare genetic disease, have access to two care centers in Nebraska: the Pediatric Cystic Fibrosis Care Center at Children’s Hospital and Medical Center and the Adult Cystic Fibrosis Care Center at UNMC. The Cystic Fibrosis Foundation's (CFF) care center network combines clinical research with medical care best practices and has been cited by the National Institutes of Health as a model of effective and efficient healthcare delivery for a chronic disease.
“Our care centers consist of a multidisciplinary team of healthcare professionals that range from doctors, nurses, social workers, pharmacists, physical therapists and more. Cystic fibrosis is a complicated disease, so we make sure that those with CF get the best care possible,” said Laurent Quenaud, Executive Director of the Cystic Fibrosis Foundation – Nebraska Chapter.
There are approximately 250 people in the state of Nebraska who suffer from cystic fibrosis. The care they receive from the amazing healthcare professionals at our local CF care centers is nothing short of life-saving, Quenaud said. “We are fortunate to have two of the nation’s top CF care centers right here in Nebraska.”
The support provided through the care center is hugely important to those with CF. “When the care center model was adopted and funded by the Cystic Fibrosis Foundation, there was dramatic shift in the life expectancy of those with CF,” Quenaud said. “As our treatments get better and better, life with CF also gets more and more complicated. Without our amazing care centers and the teams that staff them, the care of those with cystic fibrosis would suffer.”
CFF continues to fund and grow local care centers, thanks to the support from donors, including those who give through CHC-NE. Today, there are 120 CF Care Centers in varying locations.