Rohan Seth
@rohanseth
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Co-founder at Clubhouse and Lydian Accelerator. Previously: Founder Memry Labs (acq. Opendoor), Google
Oakland, CA
Joined August 2009
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Last Seen Profiles
8/I wrote a larger medium post with our story:
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7/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 .
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6/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.
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Thank 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!
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5/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*.
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4/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.
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3/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…
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2/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...
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🤖
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Last night was special. Proud to build Clubhouse with
@pdavison
. We’re working hard to open this up for everyone.
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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:
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Clubhouse Japan ❤️
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We can change patient outcomes. But first, the FDA needs to change. Proud of my friends Brian and Sandra.
We share our ALS journey—the hope, pain, laughter, love and tears—to make my generation of patients the last.
So tonight I have an ask:
Please share this video to let everyone know that ALS is fatal today but for the first time ever we can change that.
#ThankYou
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Join our team!
We are looking to hire our first few engineers and designers at
@joinClubhouse
. Please share this if you know someone amazing? Thank you! 🙏
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Big fan of what
@noor_siddiqui_
and her team are doing to help end genetic diseases. 🙏
We believe every couple that wants to conceive, should be able to do so confidently.
Announcing Orchid, a first-of-its-kind, ultra high resolution genetic testing system for couples.
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I’m always surprised how much the genetic disease community has embraced the term “Rare”. It’s marketing got wrong. It creates two problems (1) People assume this won't happen to them (2) We prioritize these below other issues. We should be educating people how common these are!
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Our first launch video, and it's so... us :)
p.s. michelle is tired. help her out by visiting .
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We just launched new share images for Clubhouse links! As a demo, friendly reminder to join The Gene Fixers club to hear patients & researchers tackle the long tail of genetic disease.
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Our engineering team hosting a room to discuss their first blog post. They'll be doing a dramatic reading of their favorite HackerNews comments :)
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Our engineering team is hosting a room about how they built Clubhouse for Android in 10 weeks!
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Ethan has been an incredible advisor and mentor for me for the past 3 months. He's a true advocate for patients like Lydia, is creative and not afraid to challenge the status quo, and is forgiving when I screw up scientific terms. THANK YOU. 🙏
Couldn’t be prouder to be advising!
The barrier to do science has melted away for families affected by genetic disease. A family can now complete a diagnostic odyssey, assemble a network of scientists and launch a n-of-1 cure odyssey in WEEKS, not years
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We desperately need a Github for research. Too much is happening in silos. Too much is kept private despite no commercial value.
Patients/foundations: Are there any good shareable legal agreements/templates for open sharing of data and research materials/samples? Hoping there is something multiple patient orgs could re-use when negotiating with institutions.
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Software can eat the long tail of diseases.
@mattmight
is an inspiration. I hadn't heard of him until Lydia was already a month old but I like to break-up our journey to cure Lydia as "before-Matt" and "after-Matt".
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A quick Talkshow with
@eperlste
-- "N of 1 - creating personalized genetic drugs.” Next time we’ll take live questions!
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@EspreeDevora
Hi! Thanks for asking. She’s comfortable now but unfortunately quite severely developmentally delayed. We continue to make good progress towards her genetic treatment and hoping she will get it later this year!
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@juberti
@Google
@Clubhouse
@pdavison
Couldn't be more excited to work alongside you Justin! Welcome to the team!
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Serious question re: Lydia's ASO research. How can we limit our exposure to COVID19 related shutdowns? Trying to move our reagents out of university labs, and keeping all operations stateside. What else?
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Discussion on ASOs on Clubhouse
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Proud of
@zainy
and team working to bring an end to chronic disease!
It takes hundreds of hours of research and months of experimentation to find
#LongCovid
or
#MECFS
treatments that work for you.
To help, we're launching the Eureka Plans: a place to discover science-based protocols that are working for people like you.
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@dksf
@toddg777
@notalexlin
@lennysan
If you change the version number, it's a manual approval. If you just change the build number, it's an automated approval. CH will always be v0.1 ;)
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@SMImmunology
Thank you Saman. Delivery will most likely be intrathecal every ~3 months (similar to delivery of Spinraza for SMA)
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@PearlF
@joinClubhouse
@dnatieclub
@onnofaber
@eperlste
@stopbatten
Wow, this is amazing. All credit to
@eperlste
for building this community.
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@ChrisHeery
@SMImmunology
Would love to chat. I’m still learning. Please let me know when you’re available. Rohanseth
@cs
.stanford.edu
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Every year the flu season seems to get longer and more commercialized.
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@CNSdrughunter
Ana, thank you for your continued support in this journey. 🙏 You are always extremely generous with your time and energy. We promise to pay it forward to help other families.
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@kevin
@AustinGreen
Kevin! Long time old friend. Would love to have you on Clubhouse. (Mikey had a great session on it yesterday!) DM me your number so we can whitelist it.
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@LizzInjinia
@njokingumi
Yes, that's Lydia. Thanks for asking. Lydia is quite developmentally delayed, but she's stable day to day. We managed to catch this video of her laughing a few weeks ago. Hope you enjoy it!
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@freialobo
Thank you for the support 🙏 As parents you do whatever you can for your child, and then some more. Go hug your parents!
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@4LOVofScience
The folks who are outraged by the ethics of these experiments probably don't have loved ones affected by genetic diseases or HIV.
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@car1os
Thanks for being on Team Lydia, Carlos. Hopefully one day she can drink all the tequila you brought her :)
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@KatieS
I reported so much Gmail spam, that now 80% of my legit email goes into my spam, so now I spend my time marking things as unspam. The circle of life!
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@mattmight
Ugh, I can't even begin to fathom the situation. I'm so sorry. Rooting for you guys.
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@CNSdrughunter
@curedravet
@TheNotoriousEEG
@Kcnq2Cure
@FamilieSCN2A
@PCDH19Alliance
@curestxbp1
@stxbp1
@cdkl5spain
@CDKL5USA
@EpiCARE_ERN
Thanks for sharing Ana! Here's a non-paywall link for others in this thread:
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@leepnet
@BankMercury
Congrats Tommy! I just switched to Mercury a couple of weeks ago and was blown away by the experience. I’ve been recommending everyone to it.
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@Just_Kate
@KatColeATL
@hilliaryt
10000%! Please send us leads at rohanandpaul
@alphaexplorationco
.com. Thank you!!
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Taylor, Imma let you finish, but 1989 was the best album of all time!
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@juberti
@Clubhouse
Animation bug makes it look as if I'm the one with the singing talent! Tweet to report
@danielrhammond
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@sarablask
Thank you for all your help on this journey Sara. You are incredible and we are so grateful to know you.
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@asynchio
Thank you so much for sharing and for your generous donation Joseph. Given your background, I would love to meet and brainstorm sometime how best to open source this knowledge.
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@lisamjarvis
Thank you for your support. We are early and continuing to learn, so if you ever want to brainstorm on how we can be most helpful to the broader community, please let me know!
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@lukebrosen
@eperlste
@liaamboyle
@mattmight
@cziscience
@TaniaSimoncelli
Aren’t there a ton of companies formed around buying shelved compounds? (Big IPO this week for one such Corp) I would imagine that possibility of future sale is what keeps companies from releasing them. Perhaps there’s a template to allow foundations to purchase them instead...
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I wasn't born in the USA but sure was born to run. Going as Bruce springsteen today. Taking song requests.
http://t.co/591maM4u
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@arnabdotorg
@mattmight
Matt has been extremely generous with his time and advice already. More than that, he’s the inspiration behind all of this. I heard about him on January 29. Since then it’s been game on!
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We made another fun little thing. Try it at:
Phone-A-Friend: Finds a friend who is free to talk at the press of a button ☎️
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@hunterwalk
@pdavison
@dksf
Haha, I like the "I will only talk to DK if he's talking to 3 of my other friends" setting.
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WHAT.
Wow. Jeb to drop out. Reminder: last time GOP won without a Bush or Nixon was 1928.
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@varadhjain
@bella_bongiorno
I'm afraid this is quite far out of my area of knowledge, but happy to brainstorm to see how I can be helpful.
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