Helping NZ children living with epilepsy
Helping NZ children living with epilepsy get access to Medicalized Ketogenic Therapies.
Nationwide
Since November last year I have been raising money to help support the families of NZ Children living with Epilepsy get access to Medicalized Ketogenic Therapies. It is a diet and science that requires 24/7/365 monitoring and for growing kids, needing a balanced diet while juxtaposed with the need to manage their medication, makes the process very complex, but it is very successful at reducing and controlling seizures.
I founded a charity called DeFi Ripple Effects. The approach I am taking is to raise funds and invest it, using the yield to provide help. This means that while I need to raise a larger amount, the money is there forever to provide help for families. And I will keep raising funds and adding to the saved balance so that I can do more good.
So what do I need? I need to raise another USD4500 which is around NZD6600. I am going to run again in November, another half marathon. From now until then the saved funds will keep earning and you can see the balance here https://app.angelprotocol.io/profile/66/endowment
You might have supported me before. Please do what you can to support me again. If you know anyone in the global epilepsy community please share the story and this page.
Andrew Kerr's involvement (page creator)
I am the founder and a trustee of DeFi Ripple Effects www.drfx.xyz.
Use of funds
The money will be raised and invested, using the yield to assist with ketogenic therapies for epileptic children.
Other page links
Latest update
I got round, but I am not finished, I will keep shouting... 20 November 2022
Morning/Evening all,
An update on the run. This was my first mass run, by this I mean I was one of 12000 people that turned up to run or walk a Marathon, Half Marathon or 10km. This meant there were several new things for me, and I made some rookie mistakes. The main rookie mistake was misjudging the final portaloo visit, having to queue for 25 mins , which meant I missed my wave (to stop slow runners getting in the way of the fast ones, they send groups off in waves).
The next mistake was a result of the first. Not settling into a rhythm. I spent the first 8kms dodging people and having to walk due to the narrow course. It all ended up with my legs getting heavy at 11kms and I could not keep up the pace I needed/wanted. It sounds like moaning or excuses, it isn’t, I now know much more and will be better prepared for the next one.
I finished at 2:22:55, just over 26:30 faster than last year, and 3:51 faster than my best training run. But now, Sunday 9am, I can walk 🙂.
Am I pleased with what I have achieved? Yes I am. I ran a race with thousands of others and had to negotiate narrow paths, slow runners, walkers, my own head and the nagging doubt (16kms, then 17kms were the toughest given my experience last year) and then the missed target of under 2:20, but I made it round and I am up and about, a little sore, but feeling really good.
Thank you for supporting me. Thank you for sponsoring me. The cause I am running for, does not go away, so you will see more posts from me about Drug Resistant epilepsy and NZ children. If you can please help me by letting me know I am not shouting to an empty room, like, share and follow, it all helps.
All the best.
Andy
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