Replying to @rohanseth
8/I wrote a larger medium post with our story:
Rohan Seth
421 posts
Rohan Seth
@rohanseth
Co-founder at Clubhouse and Lydian Accelerator
Joined August 2009
- Replying to @rohanseth7/We are fortunate to be part of an incredible tech community. Help us save our little girl and pave the path for others devastated by genetic typos. Please DM me to chat about how you can help, retweet this, or donate directly on savelydia.com.
- Replying to @rohanseth6/We are on a mission. We have set up Lydian Accelerator to fill this gap. By open sourcing processes, tools and data, we can accelerate individual ASO treatments for all. With each treatment, we gather more data to reduce the time & cost.
- Replying to @rohansethThank you for all the love and support today. I should add, we are early in our journey. If anyone wants to brainstorm about best ways for a non-profit to open source knowledge and data, please DM me and I'd love to chat!
- Replying to @rohanseth5/Traditional pharma isn’t set up to make $ from individual treatments. They have labeled these as “rare” and moved on. These are not rare. There are millions suffering. The tech exists; ASOs can be customized *within months*.
- Replying to @rohanseth4/There are 6 billion characters in our DNA. Everyone has typos in this code. Some typos cause serious diseases, like Lydia’s. There are millions with serious typos just slightly different from each other. To fix them, we need a customized drug for each patient.
- Replying to @rohanseth3/We dived into a technology called Antisense Oligonucleotide (ASO) that is *very* successful at silencing mutations at the source. Lydia’s treatment can be created within months! But this isn’t available to most children. Here’s why…
- Replying to @rohanseth2/Over the past few months, we have done everything a parent would do. We read 100s of academic papers, built partnerships with scientists, translated foreign medical records, and self-compounded drugs at home...
- Last night was special. Proud to build Clubhouse with @pdavison. We’re working hard to open this up for everyone.
- When we shared Lydia's story in July, we were contacted by many parents asking for more details about our journey. I decided to document our diagnostic and treatment odyssey here:
- Clubhouse Japan ❤️clubhouseの歌 です
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