DRFX Funding Proposal Summary
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INNOVATIVE APPROACH TO TACKLING EPILEPSY FOR KIDS IN NEW ZEALAND
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DEFI RIPPLE EFFECTS FUNDING REQUEST
DeFi Ripple Effects (DRFX) is a charity based in Masterton, Aotearoa/New Zealand. Its purpose is to help families in New Zealand through raising and investing funds to provide long term returns and assistance for improving the health and well-being of the community. One of the main causes we support is helping families whose child has epilepsy that does not respond to medication (aka Drug Resistant Epilepsy (DRE)) and is receiving instead Medicalised Ketogenic Therapy (MKT).
In New Zealand we have an estimated 2800 children under 15 who have DRE. Right now the limited existing MKT services in New Zealand are running at
maximum capacity. These services are managing 30 patients, meaning there are circa 2770 that need help.
This proposal is focussed on increasing capacity for MKT in New Zealand by training and mentoring experienced Dietitians to become MKT Dietitians and take on patients under supervision. The total funding needed is between $182,850 and $263,350. DRFX has raised $30,000 to kickstart the fundraising campaign, which means the total required to start is between $152,850 and $233,350.
The project when complete will have enabled up to 150 patients onto MKT. While returning between $2.5 million and $4.2 million in savings to Health NZ hospital emergency, medical ward and outpatient services, over the length of the project. Assuming we maintain maximum capacity at the end of the project the savings per annum will be $3.2 million.
What is Medicalised Ketogenic Therapy (MKT)?
MKT is a complex high fat diet managed by a specialist dietitian, who will have gone through intensive training and some years of patient management.
We have access to NZ’s premier expert in MKT and the software that supports MKT Dietitians and patients in diet and nutrition management. Our expert set up and lead the dedicated South Island service at Christchurch Hospital and has proven the average savings of $21500 per patient per annum.
When implemented this program will not only make the lives of 90 to 150 children better, but it will also create additional capacity in many health departments across the country. We would love for you to be part of this campaign and project with us
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ABOUT DRFX
DRFX MKT - the Why...
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I am Andy Kerr, in my 54 years I have only known 2 people who have epilepsy. In March 2021 I was driving back from Wellington to the Wairarapa and as normal was listening to Radio New Zealand (RNZ). The program cut to a story about Ketogenic therapy and its usage in treating Epilepsy, focussed on NZ children.
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From the story I learned that while the therapy had great results, it was very expensive and not funded by every NZ DHB. I also learned that the South Island Service Lead (Charlene -Dietitian) lost a patient to refractory epilepsy before medicalised ketogenic therapy was made available. Great successes have been made since the establishment of the service. And Charlene very eloquently explained why the treatment is important and will save lives.
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It is a science that requires 24/7/365 monitoring, for growing kids a balanced diet is always recommended. Juxtapose that with the need to reduce the medication applied to a child to reduce seizures, Charlene’s example was reducing seizures from 60 per day to 30 after 7 days of Ketogenic therapy. And while “Keto” is in the news because of CrossFitters, Health Faddists and general media, this medicalised form of therapy is more intensive - instead of a macro split of 70:20:10 (Fat:Protein:Carbs), to effect change on Epilepsy the target for children is as a high as 90:10 (Fat:Protein+Carbs).
You can read more about the service in New Zealand and the benefits at the link below.
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The what...
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So… What to do? Well, two things. The first is to raise some money. The second is to raise awareness.
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The benefit that DRFX MKT can provide has been stalled lately due to the service that provides the clinical help reaching maximum capacity. So we have turned our thoughts to how can we increase the number of children being serviced by MKT.
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In Winter 2024 we are launching a campaign to raise funds to start a training program in New Zealand for MKT Dietitians.
Our plan is to take the current service for 30 patients and expand the MKT offering to up to another 120 patients over 3 years. This is done by training 3 to 5 Dietitians to become MKT Dietitians.
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The benefits to the patients can be from a reduction in seizures to complete relief from seizures. Plus the life improvements for the families that come from not having as many seizures to manage.
There are also benefits to the Health NZ system. Each patient taken on to MKT creates a saving in reduced hours required for management of that patient in Ambulances, EDs and Wards, plus the nurses and consultants time. This saving equates to NZD21,500 per child per annum. ​
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The how...
So how do we do this?
We raise money. DRFX has raised NZD30,000, we need another $132,150 to $212,650. We are applying to Trusts and NZ Institutions and will be running and raising too.
The summary for the proposal is below. If you can help and you would like more details please let us know.​​
