PKU/IEM Dietary Management and Wellbeing APP
Comprehensive management tool for day to day IEM management, diet/menu planning, nutritional monitoring, protein counting, milestone recording, healthy wellbeing goal setting & tracking (To be complemented by adult wellness coaching program down the track)
Outreach support, mentoring and educational programs for carers of high needs PKU patients and at risk transitional groups
Carers of Non or Late diagnosed PKU (pre-1966) Maternal/Pregnant Women Teens Transitioning to adults (Collaboration with Royal Melbourne Hospital)
Newly Diagnosed IEM ‘new parent’ & ‘infant’ kits
Introductory welcome bags for parents of newly diagnosed PKU & other IEM babies – containing educational materials, infant accessories, protein counting and cooking aids, IEM Teddy Bear and product samples to help get them through the early stages (Childcare & School starter bags to follow down the track)
Family travel/attendance assistance for MDDA family retreats & remote clinics
Family retreats and remote clinics provide families with face to face peer support and clinical educational opportunities PKU and other IEM families with financial hardship, Northern and Tasmanian families (with no in state clinic services) take priority
Low Protein pop up kitchen (multi-city bi-annual roadshow) providing hampers and meals for foodbank and pre-order
Pre-order meal service also supporting families in need with delicious, home cooked, nutritional, convenient and freezable “Go To” and “Special Celebrations” Low Protein meals
National program recognising “Low Protein” as a special dietary option in participating venues around Australia
Enabling IEM families and individuals to enjoy a ‘regular’ dining experience with suitable meal options and recognising Low Protein (LP) as a special dietary need
RESEARCH & CLINICAL CARE
MDDA’s National PKU & IEM Research and Clinical Care Fund Current clinical research projects needing funding include…
PKU & IEM Neuro-Psych research and diagnosis program/resource (Ph#1: Paediatric Ph#2: Adults)
Research into long-term effects of IEM management on adult health outcomes
Research for emerging treatments and clinical trials National PKU & IEM Patient Data Registry
Funds a low protein food hamper and freezer meal pack for a family in need
Funds a PKU Pathways Transitional Resource Kit for a Maternal/Pregnant Women transitioning teen.
Funds a PKU Pathways carers resource guide & patient compendium to assist with community care of a non or late diagnosed PKU patient.
Funds an Early Starter ”PeeKabU” new PKU/IEM parent bag (on diagnosis) or infant starter bag (6 months in) for a newly diagnosed family.
Funds an PKU Pathways educational session for a carer of a non or late diagnosed PKU patient in community care.
Funds an adult or teen’s participation in “I-EMPOWER” 8 week Wellbeing Transformation and Peer Mentoring Program.
Funds a neuro-psych assessment & care plan for a special needs IEM child.
Funds an IEM adult or parent/guardian with child to participate in a family educational weekend retreat.
Funds a Low Protein venue accreditation program kit and consultation
Funds a Low Protein Pop Up Kitchen event