All Children's Hospital Pediatric Cystic Fibrosis Center
Join us for the 24th Annual Cystic Fibrosis Family Education Event
Friday, April 17 from 6-9 p.m. at Bayfront Health St. Petersburg, Sheen Conference Center
All Children's Hospital is a Cystic Fibrosis Foundation accredited care center. Caring for more than 170 pediatric patients the Cystic Fibrosis Center provides comprehensive services, ranging from evaluation and diagnosis to treatment and patient education. Because Cystic Fibrosis (CF) is a complex disease that affects so many parts of the body, proper care requires specialized knowledge. ACH CF Center is staffed by a dedicated multidisciplinary team. The CF team at the ACH CF Center works with each individual who has CF to meet that person's specific needs and to keep them as healthy as possible. This center provides CF care, including nutrition, pulmonary care and gastroenterology support, as well as psychosocial specialties for children (newborn to age 18) with CF.
The ACH CF Center also participates in CF clinical research, which plays a critical role in developing new therapies and educating medical professionals about CF and the care people living with the disease require. Data from people with CF is collected in a national patient registry, which serves as a rich resource for your CF health care provider and CF researchers. The latest potential treatments for CF are being tested in clinical trials at many CF Foundation-accredited care centers. Patients can help by volunteering to participate in a clinical trial that will help to advance research for a cure.
The CF Center provides comprehensive care, including:
- Diagnostic testing:
- Sweat test
- Genetic tests
- Throat cultures
- Sputum cultures
- Blood work
- Chest x-rays
- Pulmonary function testing to see how well your lungs are working
- Training in airway clearance techniques and exercise regimens
- Close monitoring of nutritional status
- Patient and family education
- Emotional support and counseling referrals
- Access to parent support groups and CF community organizations
- Adult transition management
CF Care Team
The ACH Pediatric CF Center provides personalized care and support to our patients and families through a team approach. The Pediatric Pulmonologists, Jeffrey Ewig MD, Magdalen Gondor MD, Seifu Demissie MD, Tony Kriseman MD, Maria Bolongna, ARNP and Allyson Casey, ARNP from Pediatric Pulmonary Associates, P.A. are the lead clinicians for the ACH CF Center. Dr. Gondor has been the medical director of the ACH CF Center since 2003. Patients are seen in outpatient clinics in St. Petersburg, Sarasota and Tampa, Florida. The CF clinicians are active principal investigators for CF research clinical trials. The clinicians participate in professional and community organizations relating to pediatric pulmonary disorders. The physicians provide educational lectures at seminars, support groups and conferences.
CF Nurse Coordinator: Lisa DeStefano, RN, MSN
- Assist in coordinating the care of the CF patients including implementation of physician's orders and plan of care with support of Pediatric Pulmonary Association, PA healthcare staff.
- Provides information about the patient's healthcare routines, medications, related equipment, patient education and any other health management questions including telephone triage.
- Generates correspondence for patients to insurance providers, schools, employers, etc.
- Maintains the National CF Registry Database for the ACH CF Center.
Coordinates the Florida Newborn Screen Program for CF at the ACH CF Center.
CF Nutritionist: Vanessa Carr, MS RD NSCA-CPT
- Completes annual nutritional assessment, which includes review of growth and ideal weight, enzyme use, vitamin levels, diet and caloric intake, and CF complications of diabetes and osteoporosis.
- Provides education for enzyme use, increasing caloric intake, and recommendations for tube feeding intervention.
Provides consultations for CF patients while in the hospital.
CF Respiratory Therapist: Brittany List, RRT
- Instruction and education for patients and families on age appropriate airway clearance techniques and equipment for outpatient and inpatient visits and annual airway clearance assessment.
- Performs pulmonary function testing and respiratory medication evaluations including Hypertonic Saline.
Provides education to respiratory caregivers and nursing staff and consultations for inpatients.
CF Research Coordinator: Kathy Hosler, RN
- Coordinates the research program for the ACH CF Center, including all patient participation and study visits.
- Completes all coordination of the regulatory process of CF research protocols.
Assist Principal Investigator with implementing research studies, including but not limited to informed consent, maintaining confidentiality, adhering to government, human subject's protection, protocol regulations and good clinical practice.
CF Social Worker: Heather Bradford, MSW, St. Petersburg & Sarasota-outpatient & inpatient
Kathy Eison, MSW-Tampa-outpatient
- Provides psychosocial assessment of patients and families.
- Makes referrals for financial, physical and emotional resources.
- Provides counseling to patients and families to cope with life transitions and difficulties of living with a chronic illness.
Provides support and education to the team in areas of family dynamics, clear communication and group process.
CF Child Life Therapist: Katie McGinnis, CCLS
- Provide opportunities to meet emotional, developmental and recreational needs of hospitalized children.
- Work with patients and family members to develop healthy coping
- Provide developmentally appropriate preparation for procedures and surgeries.
Help siblings understand and deal with the impact on illness on their family.
CF Medical Assistant: GeorgeAnna Lawrance, MA, LMT
Assist with telephone triage, medication refills, and correspondence for patients to insurance providers, schools, employers, etc. Completes prior authorizations for medications, etc.
Patient Academic Service Coordinator: Jamie May, Certified Teacher
- Instructional assistance with homework is provided by the hospital's certified school teacher and volunteer tutors. Skill-building and enrichment activities may include reading, math practice or educational games that inspire confidence and joy in learning, and offer comfort during their hospital stay. Laptops and other materials are provided as needed to facilitate learning.
- Technology assistance is provided for students taking classes over the telephone or computer. This may include helping a patient with the process until they are comfortable, to facilitating wireless internet access which is provided by the hospital.
- Hospital/homebound enrollment and coordination of services as needed.
- Facilitation with school per parent's request to help with school absence concerns, lack of progress due to illness, or to arrange homework.
Information and educational resources are provided for parents to aid school communication and awareness, and to help parents advocate for their child's needs. Information is provided on alternative education when appropriate (e.g., online classes, home schooling, GED, or vocational rehabilitation programs) and for transition to college.
CF Registered Nurse: Cindy Brown, RN
- Coordinates the Florida Newborn Screen Program for CF at the ACH CF Center
- Performs updates for the Cystic Fibrosis Foundation Patient Registry
Provides nursing care to CF patients at the St. Petersburg outpatient clinics
All Children's Hospital Nursing & Healthcare Providers
- Specialty trained nursing and healthcare providers assist with the medical intervention and support of patients requiring inpatient hospital care. Facilitated continuity of outpatient services.