Julia Mauรฉs's Avatar

Julia Mauรฉs

@itsnotpink.bsky.social

She/Her. Living w #MBC since '13 & advocating for people w MBC to LIVE. #AntiRacist #InclusionPledge. Co-founder of @graspcancer.bsky.social & @therightdose.bsky.social. ๐Ÿ‡ง๐Ÿ‡ท๐Ÿ‡บ๐Ÿ‡ธ๐Ÿ‡ฉ๐Ÿ‡ช

851 Followers  |  315 Following  |  45 Posts  |  Joined: 11.11.2024  |  1.7128

Latest posts by itsnotpink.bsky.social on Bluesky

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Governance BIG is dedicated to supporting all research stakeholders and facilitating ethically sound human research for breast cancer.

What an honor to join the Executive Board of @bigxresearch.bsky.social! As someone living w metastatic breast cancer & connected to many other patients, Iโ€™m excited to support research that reflects what truly matters to people dealing with this disease.
๐Ÿ”— bigagainstbreastcancer.org/about-big/go...

30.06.2025 20:27 โ€” ๐Ÿ‘ 9    ๐Ÿ” 1    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
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On this episode of #HeartToHeart, we're joined by @itsnotpink.bsky.social โ€ฌof @graspcancer.bsky.social.

Julia shares her treatment journey with IC-OS President @susandent.bsky.social and treating physician Ana Barac, MD.

Tune In: tinyurl.com/bpju4ec4

19.05.2025 16:48 โ€” ๐Ÿ‘ 2    ๐Ÿ” 1    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 1
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Pregnancy and Breast Cancer | Podcast | ASCO Publications Dr. Chino talks with Dr. Erin Roesch and patient advocate Julia Maues about pregnancy associated cancer with a focus on breast cancer, the most common cancer diagnosed during pregnancy. This discussio...

๐ŸŽ™๏ธIt was my pleasure to speak with Dr. Erin Roesch & phenomenal patient advocate @itsnotpink.bsky.social about pregnancy associated cancer with a focus on #breastcancer, the most common cancer dx during pregnancy. #bcsm @ascocancer.bsky.social @oncoalert.bsky.social

ascopubs.org/do/pregnancy...

19.05.2025 18:27 โ€” ๐Ÿ‘ 10    ๐Ÿ” 2    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
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Financial Toxicity and Breast Cancer: Why Does It Matter, Who Is at Risk, and How Do We Intervene? Financial toxicity, or the financial burden patients experience because of medical costs, can lead to negative patient effects including lower quality of life, compromised clinical care, and worse hea...

With โฌ†๏ธ outcomes, pts with #breastcancer have prolonged survivorship often lasting decades but may carry chronic toxicities; both ongoing tx of #MBC & long-term surveillance can add to the cumulative #financialtoxicity for #bcsm pts & families. @ascocancer.bsky.social
@oncoalert.bsky.social
#ASCO25 ๐Ÿ“–

06.05.2025 14:39 โ€” ๐Ÿ‘ 14    ๐Ÿ” 10    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
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โ€˜My lifeโ€™s purposeโ€™: A neuroscientist wants to rewire mental illness treatment and remake the field he loves Duke neuroscientist Kafui Dzirasa wants nothing less than to reengineer the brainโ€™s electrical patterns to treat anxiety, depression, bipolar disorder, and schizophrenia.

โ€œI have tried to live in a world that does not see color but have only succeeded in living in a world that does not see me.โ€

www.statnews.com/2025/01/13/k...

06.05.2025 14:43 โ€” ๐Ÿ‘ 2    ๐Ÿ” 1    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0
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Patient Advocate @itsnotpink.bsky.social discusses how @therightdose.bsky.social empowers patients in their treatment decision-making & how patients can use this information to communicate with their doctors.
๐ŸŽง Listen (all channels) or ๐Ÿ”— buff.ly/1o6hJNe
#PCDI #MBC #dosing #CanSky #BCSM

05.05.2025 18:33 โ€” ๐Ÿ‘ 1    ๐Ÿ” 2    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0
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58 years of life with metastatic breast cancer in this photoโ€”made possible by public investment in cancer research.

Now weโ€™re tossing future progress down the drain with federal research cuts. ๐Ÿ˜ข

#NBCCSummit #NBCConTheHill
#BecauseScience

05.05.2025 20:09 โ€” ๐Ÿ‘ 6    ๐Ÿ” 0    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0
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First session of #ONSCongress on antibody drug conjugates presented by #ResearchToPractice! #ONS50 #oncsky

09.04.2025 23:04 โ€” ๐Ÿ‘ 1    ๐Ÿ” 3    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0
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How FDA layoffs may impact food safety Layoffs at the Food and Drug Administration are expected to reduce the FDA's workforce by 20%.

How FDA layoffs may impact food safety
www.wbur.org/hereandnow/2...

09.04.2025 23:32 โ€” ๐Ÿ‘ 6    ๐Ÿ” 5    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 1
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Continuing to Broaden Eligibility Criteria to Make #ClinicalTrials More Representative and Inclusive: ASCOโ€“Friends of Cancer Research Joint Research Statement [Feb 9, 2021] @DrEdKim et al. @rschilsky @ASCO @CancerResrch @CCR_AACR ow.ly/jmPM50DvH0M #ctsm @FDAOncology

09.04.2025 14:54 โ€” ๐Ÿ‘ 0    ๐Ÿ” 1    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0
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Painter Amy Sherald asks: What is American? Amy Sherald, who painted former First Lady Michelle Obama's portrait in 2018, has a major survey of her work opening this week at the Whitney Museum of American Art in New York.

Amy Sherald, who painted former First Lady Michelle Obama's portrait in 2018, has a major survey of her work opening this week at the Whitney Museum of American Art in New York.

09.04.2025 16:19 โ€” ๐Ÿ‘ 1112    ๐Ÿ” 151    ๐Ÿ’ฌ 23    ๐Ÿ“Œ 14

So great to finally meet in person!!

09.04.2025 01:29 โ€” ๐Ÿ‘ 2    ๐Ÿ” 0    ๐Ÿ’ฌ 2    ๐Ÿ“Œ 0
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Florida @ASCO Delegation at Capitol Hill this morning for #ASCOAdvocacySummit @RManochakian @atperez_md @DevikaDasMD @Sonampuri

08.04.2025 14:45 โ€” ๐Ÿ‘ 7    ๐Ÿ” 1    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
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I am joining over 150 oncologists this week at the #ASCOAdvocacySummit in Washington, D.C. to urge Congress to help address existing #drugshortages and preventย future shortages of lifesaving and life-prolonging cancer drugs. @ascocancer.bsky.social

08.04.2025 18:15 โ€” ๐Ÿ‘ 10    ๐Ÿ” 3    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0
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Great @ascocancer.bsky.social Day on the Hill today - advocating for funding for cancer care and research. Favorite meeting was with Bad Bunny, Lucy, and @repemilyrandall.bsky.social from Washington State - great supporter of access to health care for all!

08.04.2025 21:32 โ€” ๐Ÿ‘ 8    ๐Ÿ” 2    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0
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An honor to meet w/ #RepGabeAmo this AM w/Drs. Mega & Strenger to discuss key #ASCOAdvocacySummit asks including consistent funding for the NIH, NCI, and ARPA-H; the Improving Seniors' Timely Access to Care Act; partnering on a
Comprehensive Solution to End Drug Shortages. @ascocancer.bsky.social

08.04.2025 17:51 โ€” ๐Ÿ‘ 2    ๐Ÿ” 1    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0
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Engage in ASCO's Advocacy Efforts Write a letter to your lawmaker today!

Want to join us in our efforts? Visitโ€ฏasco.org/actnetworkโ€ฏto contact your Members of Congress about the issues that matter most to you! Advocates are also on the Hill to fix #PriorAuth and protect #CancerResearch funding. #ASCOAdvocacy @ascocancer.bsky.social

08.04.2025 18:23 โ€” ๐Ÿ‘ 9    ๐Ÿ” 5    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0
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An honor to meet w/Rep.Magaziner staff, Raisa Majid with Drs. Mega & Strenger to discuss key #ASCOAdvocacySummit asks including consistent funding for the NIH, NCI, and ARPA-H; the Improving Seniors' Timely Access to Care Act; partnering on a Solution to End Drug
Shortages. @ascocancer.bsky.social

08.04.2025 19:43 โ€” ๐Ÿ‘ 7    ๐Ÿ” 1    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
Two woman in front of the capital on a windy day

Two woman in front of the capital on a windy day

๐Ÿ‡บ๐Ÿ‡ธ #ASCOAdvocacySummit with my @ascocancer.bsky.social Leadership Development Program friend Dr Shilpa Gupta. We spoke to our elected officials about issues that directly impact patients: research funding, #priorAuth, & drug shortages.

Join today w/ the ACT Network:
asco.quorum.us/action_center/

08.04.2025 22:16 โ€” ๐Ÿ‘ 11    ๐Ÿ” 1    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0
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NIH scientists have a cancer breakthrough. Layoffs are delaying it. A big step forward in cancer therapy has been slowed by layoffs and new restrictions at the National Institutes of Health, where it was developed.

"Why would a #metastatic #cancer patient need any more stress? Why slow down the research when cancer rates are on the rise, particularly with young people under 50?โ€ ๐Ÿคฆ

Great questions!
#CanSky #MedSky #ScienceSky #crcsm #colorectalcancer

www.washingtonpost.com/science/2025...

07.04.2025 17:16 โ€” ๐Ÿ‘ 5    ๐Ÿ” 3    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 1
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"Metastatic breast cancer is the worst club with the best people." is truly a saying that resonates for so many. Watch the full video, plus all of the other presentations from our 2025 MBC Conference here: www.infinitestrength.org/blog/metasta...

03.04.2025 23:00 โ€” ๐Ÿ‘ 4    ๐Ÿ” 2    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0
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Doctor Behind Award-Winning Parkinsonโ€™s Research Among Scientists Purged From NIH Leading scientists at the National Institutes of Health, the USโ€™s leading medical research agency, were swept up Tuesday in the Trump administrationโ€™s latest firing blitz.

www.wired.com/story/doctor...

03.04.2025 00:14 โ€” ๐Ÿ‘ 1    ๐Ÿ” 3    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0

โ€œIn 2023, Healio reported results of a systematic review that showed abstracts of randomized phase 3 clinical trials in gastrointestinal oncology frequently use subjective minimizing language to characterize serious toxicities.โ€

03.04.2025 13:39 โ€” ๐Ÿ‘ 6    ๐Ÿ” 1    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0

Once at cancer mtg where a drug was called โ€œtolerableโ€ from the stage w/high low-grade SE % & at least 1 grade 5, which a more experienced patient told me meant death. Also fwiw, pls partner with patients themselves, who are not mentioned as sources of knowledge here #cansky #language #patients

03.04.2025 13:00 โ€” ๐Ÿ‘ 6    ๐Ÿ” 5    ๐Ÿ’ฌ 2    ๐Ÿ“Œ 1
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Watch recordings from the 2024 Breast Cancer in Young Adults Forum! ๐ŸŽฅ

๐Ÿ’ฌ Young & Strong Panel: 5 young adults share their journeys.
๐ŸŽ™๏ธ Keynote: Prof. Dame Lesley Fallowfield on better doctor-patient communication.

Watch here โฌ‡๏ธ youtube.com/playlist?lis...

#YoungAdultCancerAwarenessWeek

03.04.2025 13:05 โ€” ๐Ÿ‘ 1    ๐Ÿ” 2    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0
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Dr. Jennifer Ligibel, a @danafarber.bsky.social breast cancer oncologist, who specializes in #ExerciseResearch, discusses how strength training can help prevent #lymphedema.

02.04.2025 19:29 โ€” ๐Ÿ‘ 1    ๐Ÿ” 1    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0
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Shingles vaccine study finds 'huge protective signal' against dementia The shingles vaccine could be an effective intervention for dementia, with a large "natural experiment" in Wales finding a substantial drop in dementia risk for those who received the vaccine.

Shingles vaccine =dementia prevention www.abc.net.au/news/health/...

02.04.2025 21:05 โ€” ๐Ÿ‘ 1    ๐Ÿ” 1    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0
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Patient preferences for CDK4/6 inhibitor treatments in HR+/HER2- early #BreastCancer, a discrete choice survey study recently published in the Breast Cancer Research and Treatment journal.
๐Ÿ”“https://pubmed.ncbi.nlm.nih.gov/39915434/
@elmayermd.bsky.social @maryamlustberg.bsky.social

02.04.2025 18:02 โ€” ๐Ÿ‘ 4    ๐Ÿ” 4    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0

Alarming #cansky stats. We need better and deeper implementation of quality metrics in healthcare to help patients get guideline concordant care wherever they seek it.

01.04.2025 01:56 โ€” ๐Ÿ‘ 9    ๐Ÿ” 4    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0
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Big Pharma Needs to Get Off the Sidelines The industry canโ€™t continue to sit idly by while Robert F. Kennedy Jr. guts the nationโ€™s public health agencies.

Noticeably silent amid the upheaval at HHS? Big pharma. Every new drug has NIH somewhere in its DNA--and NIH funding supports the training of their workforce. Now they're finding out FDA isn't safe, either. Wrote about how keeping quiet isn't working My latest @opinion.bloomberg.com (gift link):

01.04.2025 15:08 โ€” ๐Ÿ‘ 823    ๐Ÿ” 332    ๐Ÿ’ฌ 41    ๐Ÿ“Œ 33

@itsnotpink is following 19 prominent accounts