FIQUI Perú is a grassroots organization created and run by parents of children and young adults suffering from cystic fibrosis (CF), a rare genetic disease which affects primarily airway and gastrointestinal function. Recent advances in high income countries for the management of this condition are lacking in Perú; a reality of which we had been aware through our own personal friendship with the organization. As soon as we were able to establish the Foundation, we reached out to FIQUI to discuss ways in which we could begin working together.  From those interactions, the Sumando Mañanas (Adding Tomorrows) Project was born in June of 2020;  in the early days of the pandemic!

The overarching goal of this project is to improve the diagnosis, treatment, quality of life and life expectancy of CF patients in Perú. To achieve this, the project focuses on training of practitioners caring for CF patients (physicians, respiratory therapists, nurses), as well as their parents and caregivers. In addition, the project provides direct assistance to patients (genetic study, devices, laboratory tests, etc.), as well as support for a respiratory therapy gym among other activities.

Achievements

Education and Dissemination

Video created to raise awareness of Cystic Fibrosis and FIQUI – Voiced by real FIQUI children with CF

Physicians Training

Physician Rotations at International Cystic Fibrosis Centers

Cystic Fibrosis Service – Lucille Packard Children’s Hospital at Stanford University – Palo Alto, California US – August 2022
Dr. Rosselym Giraldo – Pediatric Pulmonologist
Instituto Nacional de Salud del Niño
Dr. Ysabel Zapata – Pediatric Pulmonologist
Hospital Rebagliati

Participation of Professionals in International CF Conferences

European Cystic Fibrosis Society Conference – Rotterdam, June 2022
Dr. Jairo Curioso – Pediatric Pulmonologist (Hospital Rebagliati), Dr. Jose Raa – Adult Pulmonologist (Hospital Loayza), Dr. Ana Muñoz – Pediatric Gastroenterologist (Hospital Rebagliati), Dr. Bianca Miranda – Pediatric Endocrinologist (Univ. peruana Cayetano Heredia), Ms. Juselly Ramos – Nutritionist (FIQUI)
North American Cystic Fibrosis Conference, Cystic Fibrosis Foundation – Philadelphia, November 2022
Dr. Juan Carlos Torres – Pediatric Pulmonologist (Instituto Nacional de Salud del Niño-MINSA).
Dr. Julio César Arbulú – Pediatric Pulmonologist (Hospital Rebagliati-EsSalud).

Therapist Trainings

Training sessions at FIQUI Gym with Walter Huntter, kinesiologist specialized in cystic fibrosis, from Hospital Especializado de Agudos y Crónicos “Dr. Antonio A. Cetrángolo” (Buenos Aires Argentina) –Lima, December 15-16, 2023
FIQUI Therapist Leonardo Huamaní attended a workshop on Bronchial Hygiene Techniques in Córdoba, Argentina

Nurse Training

FIQUI therapist Leonardo Huamaní offered a three-part respiratory therapy training program for Instituto Nacional de Salud del Niño (INSN) nurses who take care of CF patients while hospitalized. Part 1 was a virtual CF theoretical session.
Part 2 – Practical Workshop at FIQUI Gym
Part 3 – Practical Session with Patients at INSN

Parent Trainings

Respiratory Therapy Gym

Last Updated on July 17, 2023 by mariaamilla