halukakin

8 ms·

31.
by halukakin 5y ago
Thank you for sharing this. I think we should add such organizations' links to idefine website. In this case, I'm guessing not all Australian parents would know about this org.
32.
by halukakin 5y ago
That's a good question. Several days/hours worth of PT. Hospital visits/stays every few months. Lab work. That should add up to something for the insurance companies.
33.
by halukakin 5y ago
Received it. Thank you Trey.
34.
by halukakin 5y ago
Definitely! I have a few creative agencies in mind to get in touch with.
35.
by halukakin 5y ago
That's my layman question as well since the first covid injection. Maybe my daughter getting a shot everyday/week/month? Like insulin injections.
36.
by halukakin 5y ago
Thank you! I don't see the companies as evil. I understand how profitable it is for Novartis to sell the SMA drug. But somehow they do not touch the whole thing until the drug is ready to use. I'll read the articles.
37.
by halukakin 5y ago
"How to raise funds"
38.
by halukakin 5y ago
First time I hear about them. Looks promising. We'll put this on our list. Thank you!
39.
by halukakin 5y ago
That's a very good idea. I guess we could send out letters to them.
40.
by halukakin 5y ago
Yes definitely. Indeed I'm writing this to understand how we can do this for idefine. I wrote it in my post above. Sorry, I understand the long post made it hard to follow.
41.
by halukakin 5y ago
Yes, it turns out GLP is a very important protein. The second paper I cited above makes it sound it is pretty easy to supplement mice with GLP.
42.
by halukakin 5y ago
That is actually very smart. Right now we are limited to Netherlands and US mostly. Let me read about Canada.
43.
by halukakin 5y ago
Got it. Totally understand what you mean here. Will definitely try this.
44.
by halukakin 5y ago
Will certainly do. Thank you Alok!
45.
by halukakin 5y ago
Sometimes I share this feeling, but then I think about all the loved ones who were cured of some disease that would have been deadly 50 years ago. I don't think it's the pharma companies that are responsible for this. They are for
46.
by halukakin 5y ago
Wow. So glad for you! These rare disease stories with a positive ending give us all the hope. Best of luck!
47.
by halukakin 5y ago
Considering they managed to raise close to $100M between them, if we could even get 1-2% cross donations from their existing donors that could give us a big jump start. This is an area I think we will definitely look into.
48.
by halukakin 5y ago
I believe they call it "derisking" for the companies. It's a topic mentioned a lot on Ethan's genefixers clubhouse meetings. As you summarized, it's a very important topic. For anyone interested, the episode with Dr
49.
by halukakin 5y ago
I first heard about her efforts when she donated $40M to UCF. https://www.ucf.edu/news/scott-40-million-transformational-i... I hope we can get in touch somehow. Thank you.
50.
by halukakin 5y ago
Thank you Matt! Just so you know, "quickstart molecular biology" is my daily reading thanks to you.
51.
by halukakin 5y ago
From a software developer perspective: A github like service where every incremental research step is recorded&visible. A build management system like travis where each experiment is built and held accountable to unit tests. Something l
52.
by halukakin 5y ago
I wouldn't know the first thing about medical drugs. But I noticed, interestingly, Ketamine is a mentioned drug in the first research paper I cited above.
53.
by halukakin 5y ago
Glad to hear a good story. Sobering is a very good way to put it. For some of the parents, it just brings something else out of them. You lose the option to be a couch potato, forever.
54.
by halukakin 5y ago
Thank you! Thanks to Ethan and Julia's weekly meetings on clubhouse, I've heard about some of these. Alok's DAO-based funding system seems very promising. I hope that gets traction. I thought I knew more about RareBase, but n
55.
by halukakin 5y ago
These are great leads. I will study them. Thank you.
56.
by halukakin 5y ago
That's a big tip for the down the road. Will try to understand this better. Thank you.
57.
by halukakin 5y ago
Thank you. Great job btw, lifebit could do some real good! Same idea for me too. If I can manage to make a clean exit on my existing business, medicine R&D will be where I will spend the rest of my time.
58.
by halukakin 5y ago
Thank you so much. First time I hear about Kennedy Krieger. Their "feeding disorder" service caught my eye. That's a big issue for us. They post some pretty good results. https://www.kennedykrieger.org/outcome
59.
by halukakin 5y ago
This looks very helpful. First time I heard about this organization. Apparently, they train patient groups like us. They even host their own drug repurposing conference. I'll signup on the email list and study their site. Thank you.
60.
by halukakin 5y ago
We couldn't get in last year's batch. I'm thinking we will re-apply this year. If any CZI team members read this at some point. Any pointers for the future would be a great help.

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