Conference Resources

2023 Australian Pompe Association & New Zealand Pompe Network Family Support Forum

 

Conference Resource Page

We hope you are enjoying the conference. We have put together some supporting documents and where available, links to more information or video presentations from our conference. We hope you find these useful.

This web page will be updated with more information if made available by speakers, so be sure to check this page again when you get home from conference.

We will leave this page up for 1 month after the conference, so make sure you download all the information you require. Most information is in a downloadable form that you can save as a digital file on your computer or print out.

Edit- This page will deleted very soon, please download/save what you need.

Get the agenda >HERE<

Day 1 – Saturday 21 October

When to treat for LOPD

Purpose

Thoroughly phenotype children with late-onset Pompe disease (LOPD) diagnosed via newborn screening (NBS) to provide guidance for long-term follow up.

Download paper: Early clinical phenotype of late onset Pompe disease: Lessons learned from newborn screening

What is Gene Therapy and Substrate reduction Therapy?

What Is Gene Therapy?

Download the latest version of What is Gene Therapy by the International Pompe Association.

What Is Substrate Reduction Therapy?

Download information sheet on Substrate Reduction Therapy.

Substrate Reduction Therapy Data

Download excellent in-depth information and data on Substrate Reduction Therapy by Maze Therapeutics.

Anesthetics and Pompe Disease

Physical Therapy and Exercise

Exercise and Physical Therapy

Download the latest version of Exercise and Physical therapy by the International Pompe Association.

Physio Therapy Series for Pompe Disease

This video series contains 59 short videos.. Use the >> button at the bottom of the video to scroll to next video.

Nutrition and Dietary

Download the latest version of Nutrition and Diet by the International Pompe Association.

New Born Screening

Better Access Australia Newborn Screening Campaign

Click through to the Better Access Australia website to see why NBS needs to be updated in Australia and advocacy work being done.

Australian Pompe Association Newborn Screening campaign and advocacy.

Click through to the Australian Pompe Association website to see why NBS needs to be updated in Australia and advocacy work being done.

Pre-conception testing.

Having Children

Download the latest version of Having Children when you have Pompe by the International Pompe Association.

Care 4 Rare Nursing service

Care 4 Rare Nursing service

Follow the link to our website for a full list of services and information.

Care 4 Rare Nurse service Brochure

Download the Care for Rare service Brochure

Day 2 – Sunday 22nd October

Clinical Trials

The Drug Development Process

Download The Drug Development Process by Amicus Therapeutics.

A Guide to Reading a Clinical
or Research Publication

Download the A Guide to Reading a Clinical
or Research Publication by Amicus Therapeutics.

Medical progress in pompe disease

Download the Medical progress in pompe disease by the International Pompe Association for more information about clinical trials.

Reggies Gift

A financial support program to help Australian children and their families living with Infantile Pompe Disease

Fundraising Projects

Gracie’s Boutique has offered the Australian Pompe Association a 7 day online sales event from 7am Monday 13th November to midnight Sunday 19th November.

The Australian Pompe Association gets 20% of sales when we use the codeword  POMPE at check out.

There are some very, very nice handbags, candles, giftware as well as gorgeous tops and dresses. All beautifully made and absolute quality. Treat your self for Pompe!

We will send an email reminder and Facebook reminders the week of promo.

Download the app below to donate spare change to the APA! This app allows you to round your purchases up to the nearest dollar, and the small change goes to the APA. You can cap the weekly amount through the app EG: $2 ,$5 etc maximum per week.

Small change for big change. Scan the QR code below to start.

Virtual Reality- Pain, Anxiety and Mobility

VirtReal by Mobiddiction is all about using Virtual Reality (VR) to assist and improve peoples lives. From creating dynamic virtual conferences to helping palliative care patients with immersive experiences including a large content library and custom designed simplified gaming experience powered by our platform Mobiconnect.

COGY Wheelchair Demo Video

As seen at the conference

COGY is the world’s first wheelchair that moves by pedaling. The technology used in COGY wheelchairs helps increase mobility, serving as a rehabilitation method for those who suffer from spinal cord injury, stroke, cerebral palsy, and other conditions.

The Australian Pompe Association is not endorsing or recommending this product. Talk to your OT or other disability professional before buying any disability equipment.

General Information – Pompe disease.

Since its launch, the MLAK system has been widely used throughout Australia. It has been installed at railway stations, accessible toilets in Council facilities, shopping centers, and in National Parks.

The MLAK system is also used for adaptive playground equipment such as the Liberty Swing.

To purchase a key from the MLAA Support Office, please visit our website:
https://masterlocksmiths.com.au/mlak

Alternatively, contact the MLAA Support Office.
Email: national@masterlocksmiths.com.au
Phone: 03 9338 8822
Toll Free: 1800 810 698