Thank you to the Addie Brady Foundation , Snarky Cancer, everyone who gave generously, bought shirts... and our incredible anonymous donor, who made it possible for 27 families to breathe a little easier today. The generosity is overwhelming. Thank you, from the bottom of our hearts.

We at Living LFS @livinglfs.bsky.social are awarding a total of $75K to 47 Li-Fraumeni syndrome families in need today, March 20, LFS Awareness Day. My heart is full. 💙💚 #iamlivinglfs #LFSawareness #lifraumenisyndrome #cancer

Starting this Friday 3-14 in Washington DC.

There is still time to help families in need, devastated by a hereditary cancer condition called Li-Fraumeni syndrome (LFS). Give before March 20, LFS Awareness Day, at livinglfs.org/donate #cancer #genetics

A few moments of Zen. The sound of running water and birds (house finches) and the beautiful view at Mission Trails Regional Park, San Diego

𝐓𝐨𝐝𝐚𝐲 𝐢𝐬 𝐌𝐚𝐫𝐜𝐡 𝟏𝐬𝐭! 𝐖𝐞 𝐚𝐫𝐞 𝐬𝐨 𝐞𝐱𝐜𝐢𝐭𝐞𝐝 𝐭𝐡𝐚𝐭 𝐭𝐨𝐝𝐚𝐲 𝐦𝐚𝐫𝐤𝐬 𝐭𝐡𝐞 𝐟𝐢𝐫𝐬𝐭 𝐝𝐚𝐲 𝐨𝐟 𝐋𝐢-𝐅𝐫𝐚𝐮𝐦𝐞𝐧𝐢 𝐬𝐲𝐧𝐝𝐫𝐨𝐦𝐞 𝐀𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬 𝐌𝐨𝐧𝐭𝐡! Check out www.LFSawareness.com to learn more and stay tuned to our social media pages. Donate to help us fund additional LFS Hardship Grants here: livinglfs.org/donate/

People with LFS have a 70% to nearly 100% risk of developing cancer due to a mutation of the TP53 tumor suppressor gene. Knowing you have this risk could save your life! If you have a family history of cancer, consider genetic testing - a simple blood test. Follow Living LFS to learn more.

Roses are red Violets are blue Why can’t we wake up From this nightmare coup

Take a minute to read Lainie's story of life with Li-Fraumeni syndrome. It could save your life. #cancer #lifraumeni #LFSawareness www.today.com/health/disea...

You are not powerless, and he is not unstoppable. Look at, and learn from, the funding freeze and how quickly he was forced to surrender.

Where are you donating to fight fascism in the US? So far, since January 20, I have chosen the following ⬇️ Who else needs our support? A 🧵:

Yelling into the void on a Meta platform for the first time since Jan 20.

F'ed up DNA. If you know you have it, (like I do, like Kathy does) a specialized protocol of annual full body surveillance and knowing which treatments are helpful and which are harmful can SAVE YOUR LIFE. We only know this because of research, dammit. CALL YOUR REPRESENTATIVES.

My financial support of @whatthefuckjusthappenedtoday.com is long overdue so I just put a tip in their PayPal tip jar. For a short, daily, no BS update on the shock and awe in national US politics, they are an invaluable way to stay informed without losing your mind.

@whatthefuckjusthappenedtoday.com @mattjis.bsky.social @jamditis.bsky.social are you no longer doing WTFJHT as a podcast? I listen to an entire week's worth during a long drive each weekend and find it really helpful. Thanks for all you do!

If you or someone you know has Li-Fraumeni syndrome & needs financial assistance for screening, #cancer treatment, travel- now is the time to apply. (An anonymous donor is matching donations!) Learn more livinglfs.org/our-work/lfs... #lifraumeni #Genetics #Oncology #lifraumenisyndrome #LFSawareness

Yesterday’s live is now on YouTube: m.youtube.com/watch?featur...

Follow @laurenfoxwrites.bsky.social . Today she's sharing posts that contain good news, and that is something ALL of us need.

A ray of sunshine on #worldcancerday: an anonymous donor is matching donations for hardship grants for people with Li-Fraumeni syndrome (LFS), a nasty genetic predisposition to developing #cancer. Please spread the good news, and please give. livinglfs.org/lets-turn-40...

things are changing quickly on the immigration beat. don't forget @propublica.org is still investigating the immigration system Right now, I'm looking for info on citizens & others w/legal status caught up in raids & workplace enforcement issues Contact info here: www.propublica.org/people/nicol...

February 4 is World Cancer Day. This is my story. If you have a family history of cancer, consider genetic testing. It could save your life. livinglfs.org/team/andi-la...

Support the work of the American Civil Liberties Union action.aclu.org/give/now

Senator Schiff, please share your plan to fight fascism in America.

Senator, how are we in California fighting back? What is your plan in this emergency?

We're in an emergency. How are we protecting our immigrant community, how are we protecting our poor, elderly, and disabled @gavinnewsom.bsky.social ?

Using critical thinking is crucial. The Wayback Machine at archive.org is your friend - it will show you historical versions of nearly any website. I just donated to them last week, their service is more valuable now than ever before.

Please don't opine. Act. It's an emergency.

It’s alarming that Elon Musk has access to government payment systems used to deliver Social Security and Medicare benefits.    He also drove out the senior career official at Treasury responsible for preventing a potential default on U.S. debt.   Congress must investigate.

@asmchrisward.bsky.social how are we fighting fascism that threatens our community? 92116 here.

@senakilahweber.bsky.social how do we as your constituents combat the rising fascism threatening our every aspect of life?

@governor.ca.gov how are we as Californians fighting this fascist regime? This is a global emergency.

@sarajacobs.house.gov please tell us how we are fighting this evil dismantling of democracy taking place in every moment and every aspect of life. Don't report. Act. Please.

@schiff.senate.gov please don't report. Please act. Stop this dictator. San Diego here.

@padilla.senate.gov how are we together stopping all of Trump's evil hatred campaigns? Please show us how we are fighting back. 92116 here.

The Internet Archive has to date downloaded 500 terabytes of US government websites, which it crawls at the end of every presidential term. The whole archive is fully searchable. This effort's housed by a donation-funded nonprofit, not a branch of the US government. blog.archive.org/2024/05/08/e...

Yes I'll weigh in. I'm a 33yr Stage IV BC survivor, given 2mos to live. I was in a Phase 1 Clinical Trial. This trial went to a phase 2&3 study benefitting other patients in the last 30yrs. The decision to pull funding from medical research has got to be one of the greatest signs Trump is insane.

Shutting down medical research — not just within NIH, but everywhere that’s funded by NIH — will have long-term effects on medicine & short-term effects on state, higher education & hospital budgets. This affects all of us, not just researchers.

Regardless of your immigration status in the U.S., you have guaranteed rights under the Constitution. Know your rights and assert them. Independientemente de su estatus migratorio en los Estados Unidos, usted tiene derechos garantizados por la Constitución. Conozca sus derechos y hágalos valer.

That we panic over the healthcare science shutdown they will scream is because we're doing heinous shit when in reality they are. Mark my words this is next.

I just reached out to my senators about the NIH situation. If you need to find out how much impact NIH has in your state in terms of dollars in and their economic impact here's a link: www.unitedformedicalresearch.org/nih-in-your-...

Tomorrow many of us will be in mourning for right now. We deserve and should be allowed a day of grief before we begin the work again. Those of us in mourning need our own place for this moment. May the oligarchy ignore us for this moment.

Joan Jett. 😍 youtu.be/b2XhKDc0eAo?...

This needs sharing every so often. It can be a little hard to discern. My take on it is, you must enjoy every moment of sweetness that presents itself, even - especially - when the moment itself is harrowing. It's a form of protest and a show of strength. - 1

Yes. If the wider rare disease community collectively invests in one of the Facebook groups alternatives that ticks privacy and affordability req's, that would spur uptake. www.mightynetworks.com/resources/fa...

We must stop condemning people who need bad systems. Disabled people who rely on Prime are NOT why Amazon profits. Folks using Facebook's well-established group functions are NOT why disinformation breeds across social media. Stop blaming people for systems so large they lack alternatives.

Personally, I'd love to entirely leave Meta. Since 2009, our all-volunteer nonprofit, Living LFS, has managed active private Facebook support groups for ~2,200 people with a rare disease. For some, this is their only connection to others with it. Open to practical suggestions.

Tonight's earth art brought me a little peace and joy. See the alt text. Do you know these red leaves? #leafart #natureart #earthart #autumn #art #nature

Dettifoss: the most powerful waterfall in Iceland, and second most powerful in Europe. Camping in a van, under the midnight sun, literally in the middle of nowhere reminded us of the old The Police song "Walking on the Moon". #landscape #photography #iceland #waterfall #blackandwhite #ThePolice