Day 5 of #ProjectLead2025 with @nbccstopbc.bsky.social
The preso Iβve been waiting for! TY Sara Hurvitz from @fredhutch.bsky.social for laying out the good/bad/ugly of clinical trial design. Sh*tty Surrogate Endpoints, Iβm coming for you! #metastaticbc #breastcancer
31.07.2025 16:16 β π 3 π 1 π¬ 0 π 0
All items thrifted or gifted
Skirt: Missoni
Blouse: Parker
Sweater: Pistola
Jewelry: vintage
THE SHOE: vintage Cork Ease (saved from death by Johnβs Shoe Repair, Lansing)
27.07.2025 15:24 β π 0 π 0 π¬ 0 π 0
Brief bsky pause to tie up loose ends in life! Today, a new chapter. Starting this AM with cell bio review next to open air fire and awaiting g start of #ProjectLEAD with @nbccstopbc.bsky.social
5 days of INTENSE science edu & advocacy. My idea of a good time! #mbc #breastcancer
#OOTD deets in π§΅
27.07.2025 15:24 β π 1 π 1 π¬ 1 π 0
Details for H.R. 2048: Metastatic Breast Cancer Access to Care Act - GovTrack.us
Details for H.R. 2048: Metastatic Breast Cancer Access to Care Act
Rep Ocasio-Cortez has not yet signed on to co-sponsor HR 2048: Metastatic Breast Cancer Access to Care Act, which now has over 60 bipartisan co-sponsors. Iβm pressuring to my own Rep to sign on to this bill too. Until it passes every Rep should feel pressure:
www.govtrack.us/congress/bil...
09.05.2025 16:35 β π 0 π 0 π¬ 0 π 0
Learned from the constituents, in person, at a breast cancer advocacy leadership conference this week in DC. I admire AOC in many ways, but I also think we can share raises concerns and I donβt apologize for asking all Reps to do more when it comes to breast cancer research and advocacy.
09.05.2025 16:35 β π 0 π 0 π¬ 1 π 0
Didnβt say she was a failure. Just asked a question about how she is serving her constituencySheβs not my rep so I am not in the disappointed group. I do think that constituents should be able to meet with their reps. And I do think that breast cancer research and access to care is an urgent issue
09.05.2025 13:42 β π 0 π 0 π¬ 1 π 0
Except, is she serving her constituents well? This week at a major breast cancer advocate conference, I learned her constituents who are BC patients tried and failed to meet with her or anyone in her office. She promised to lunch with them later. Then when they followed up? Bubkus.
09.05.2025 11:53 β π 2 π 0 π¬ 1 π 0
I know that feelingβI have yet to experience a SE profile that I wouldnβt tolerate for more time. It may come, but havenβt seen it yet. I am wishing for you that this line knocks you into a years-long durable remission
09.05.2025 11:44 β π 1 π 0 π¬ 0 π 0
Outgoing UMich Prez Santa Ono Pulls His Name from Academic Freedom Letter
Over the weekend University of Michigan President Santa Ono announced that he...
NEW: Fresh off announcing his departure for the University of Florida, outgoing University of Michigan President Santa Ono has had his name removed from the American Assoc of Colleges and Universities academic freedom letter he signed barely two weeks ago. talkingpointsmemo.com/edblog/outgo...
08.05.2025 00:13 β π 697 π 235 π¬ 137 π 164
It was WONDERFUL to meet you and hang out!
Canβt wait to do it again π₯°
07.05.2025 15:06 β π 0 π 0 π¬ 0 π 0
We just learned that Congresswoman Kristen McDonald Rivet is a YES! On #HR2408 Metastatic Breast Cancer Access to Care Act. Thank you, Congresswoman McDonald Rivet, for caring about the lives of patients with MBC.
#NBCCSummit #cansky #metastaticbc #breastcancer
06.05.2025 18:42 β π 4 π 2 π¬ 0 π 0
#OOTD hitting the Capitol to fight for passage of #HR2408 Metastatic Breast Cancer Access to Care Act, and preservation of Medicaid & cancer research $ with #NBCCSummit
With research dollars evaporating with every Sharpie stroke, weβre fighting for our lives.
#metastaticbc
#breastcancer
06.05.2025 12:49 β π 6 π 1 π¬ 0 π 0
Right? Our proud tradition of standing up for what is right is gutted and the chief knife wielder is heading out only weeks after the shameful act. I guess that maybe Florida constituents will care less or be more numb to an erosion of rights? π€·π»ββοΈ
#MarySueWhereAreYou?
05.05.2025 13:40 β π 1 π 0 π¬ 0 π 0
Mitten Represent! A mighty team from across Michigan ready to rumble to end breast cancer #NBCCSummit
05.05.2025 13:26 β π 1 π 1 π¬ 0 π 0
#OOTD at #NBCCSummit being interviewed by the amazing Rokia, who is the strategic brain behind @nbccstopbc.bsky.social. I LOVE that this org is spending resources gathering the voices and faces and lived experiences of BC patients, including me.
Pantsuit: Trina Turk
Scarf: vintage
04.05.2025 19:13 β π 1 π 1 π¬ 1 π 0
This response is helpful esp. for Republican Reps who are looking to cut the required $880B from the budget and NOT touch Medicaid. It can't be done with cutting fraud or waste and abuse; it can only be done with cutting services, eligibility or reimbirsement--which will reduce provider access
04.05.2025 16:24 β π 1 π 0 π¬ 0 π 0
Medicaid Warriors! Top tip from #NBCCSummit on responding to a Congressional reps who says: βIβll not touch Medicaidβ
βShow me your math: how will you do it w/out decreasing enrollment, decreasing coverage, or decreasing reimbursement to Drs? How do YOU make the numbers work?β Then wait.
04.05.2025 16:19 β π 1 π 0 π¬ 1 π 0
Tuesday!! Iβll connect with the CO patient advocates and share your words!
04.05.2025 15:01 β π 1 π 0 π¬ 0 π 0
The bias is especially likely when there is an uneven dropout btw. arms of a trialβinformation censoring.
04.05.2025 15:00 β π 0 π 0 π¬ 0 π 0
#NBCCSummit Amazing talk by Dr. Ian Tannock on asking critical questions about clinical trials. What jumps to me is the increase in using progression-free survival as a clinical outcome instead of overall survival. Tannock argues that PFS is very vulnerable to bias. Why? Followπ§΅1/2)
04.05.2025 15:00 β π 0 π 1 π¬ 1 π 0
Absolutely!!
04.05.2025 14:49 β π 0 π 0 π¬ 1 π 0
Thanks, friend!
04.05.2025 13:26 β π 1 π 0 π¬ 0 π 0
White woman leaning on podium labeled βNBCCβ
All outfit items thrifted:
Shoes: Converse
Dress: Anthropologie
Bracelet/nexklace: vintage
Cardi: Theory
Belt: Tracy Reese
AMAZING first day at #NBCCSummit. Deep dive on breast cancer mortality rates across 2 sessions drive home where research is headingβlooking BOTH at genetic/biological factors as well as place-based factors to more effectively treat AND hopefully prevent BC. Thank you @nbccstopbc.bsky.social
#OOTD
04.05.2025 12:31 β π 4 π 1 π¬ 1 π 0
@charlevo.bsky.social
03.05.2025 20:09 β π 0 π 0 π¬ 0 π 0
Picture of Dr. Melissa Davis delivering a talk at the podium at NBCC conference
Here's a conundrum--her research uses public genetic data. AND 80% of the global pop. is represented in only 3% of public data.π€―
The BIG takeaway from her talk is "who you are and where you are matters" when it comes to surviving cancer AND equity in research is essential to better outcomes.
03.05.2025 19:58 β π 1 π 1 π¬ 1 π 0
Dr. Melissa Davis's work on impact of ancestry at genetic level adds important level of complexity to the breast cancer disparity conversation between Black and White patients. Bottom line--its not ALL about SDH.Her team is looking at biological factors interacting with SD factors.
#NBCCSummit
1/2π§΅
03.05.2025 19:58 β π 0 π 0 π¬ 1 π 0
Don't miss the next ECLC webinar by Christine Desmedt, PhD on Opportunities of post-mortem tissue donation programs to advance metastatic cancer research - May 19th, 2025 - USA: 11:00 AM EDT | Europe: 17:00 PM CEST | Australia: 01:00 AM AEST - Register here us02web.zoom.us/webinar/regi...
02.05.2025 18:41 β π 8 π 7 π¬ 0 π 0
Law professor & author of BIG DIRTY MONEY and OTHER PEOPLEβS HOUSES
Host of LIVE morning news show https://www.youtube.com/@jentaub
@abreastcancerdiarypodcast Iβm a ILC & DCIS survivor, podcaster, #lobular advocate-mentor with #lobularbreastcanceralliance and a tabling coordinator with @standtallafc in the #breastcancer space. Passions: #exerciseoncology #liquidbiopsy #DCIS #ILC #AFC
Oncologist, researcher, and Associate Professor at Memorial Sloan Kettering. Working on optimizing lifestyle and metabolic health to improve cancer risk and outcomes.
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METAvivor exists to sustain hope for those living with stage 4 metastatic breast cancer (MBC). We are a volunteer-driven, non-profit organization that funds vital research to help improve the longevity and quality of life for MBC patients.
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Scientist, educator, senior executive, MBC patient advocate, mother, wife, sister, cat-lover; looking to make a difference in all aspects of life.
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Rightwing billionaires want to privatize NIH and use it to control universities.
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