Join us tomorrow for a #SaveRareCancerResearch toolkit presentation by ACE member Dana Deighton. If you're an cancer advocate but not already a member of ACE, we'd love to have you - learn more at advocatecollaborative.org
Advocates for Collaborative Education
@advocatecollab.bsky.social
We are patient, community, research, and policy advocates across all cancer types. We strive to unite and empower cancer advocates via collaboration, education, and dissemination of leading practices. advocatecollaborative.org
Fabulous conversation today around advocacy expertise and compensation in our monthly meeting! Excited to gather additional perspectives and share those insights to strengthen the role of patient advocacy across community, research, industry, and policy work. #CanSky #OncoSky #PatientAdvocacy
Patient advocates are generally underutilized in research and definitely under compensated - this will be a topic of discussion and exploration in our next general meeting on September 11th 10amPT/1pmET - invites should be in your inboxes!
Our next general meeting is August 14th 10amPT/1pmET - invites should be in your inboxes! If you're a patient, research, policy, community advocate - or thinking about exploring cancer advocacy - please consider joining us. All cancers, all stages, all experiences welcome. forms.gle/DrRyEKJG2JJ6...
Join us for a mid-summer update on our projects, our publications & presentations, our sponsors, and ways you can become more involved in @advocatecollab.bsky.social All members should have an invite for July 17th at 10amPT / 1pmET. If you're not yet a member, join us here forms.gle/VWT7MZHEc5qh...
"Common and uncommon toxicities: Perspectives and solutions from patient partners" Excited to hear from @scottcapozza.bsky.social @evaschumacherwulf.bsky.social @doublewhammied.bsky.social & others And then to share our @advocatecollab.bsky.social research #MASCC25
Thank you Karen for sharing more about the value of (and need for) DPD deficiency testing prior to treatment with Fluorouracil (5-FU) and/or Xeloda (Capecitabine) with our members. Anyone can learn more at test4dpd.org #crcsm #bcsm #pancsm #CanSky #OncSky
Test for DPD Deficiency before starting Chemotherapy using fluoropyrimidines
Testing serves to save lives of patients with colorectal, breast, head/neck cancer patients treated with fluorouracil or capecitabine.
test4dpd.org
Stacey Tinianov, MPH@coffeemommy.bsky.social · last yr.REMINDER to @advocatecollab.bsky.social members: Please join us tomorrow 3/6 at 10amPT/1pmET for a presentation by Karen Merritt on the DPYD gene and the value of, and the need for, DPD deficiency testing before fluoropyrimidine chemotherapy #CanSky #OncSky #PatientAdvocacy
Reminder we are hosting a Town Hall today for @advocatecollab.bsky.social members at 10amPT / 1pmET to discuss impacts of the new administration on our advocacy. What we know, what we still need to find out, and how best to move forward. #CanSky #OncSky #PatientAdvocacy #CancerResearch
So grateful to see our board secretary on The Hill amplifying the messages of the cancer community on this #WorldCancerDay #UnitedByUnique and #UnitedInUrgency #CanSky
Roberta A Albany@raalbany.bsky.social · last yr.#NBCContheHill @nbccstopbc.bsky.social #breastcancer #advocacy #stageivbreastcancer #worldcancerday
Gentle reminder to advocates everywhere: We EXIST as patient, community, research, and policy advocates because the system(s) didn't meet everyone's needs, because science was moving too slowly, because the process didn't include adequate representation. In other words, we do hard shit all day long
DYK when you google Medical Aid in Dying or Death with Dignity, the first search item that pops up is the National Suicide Hotline? Please join us today for an ACE conversation with advocate @amjohnston.bsky.social about what Medical Aid in Dying really involves & why it exists #CanSky #PallOnc
REMINDER: ACE Meeting on cancer vaccines today 1pmPT / 4pmET. Join us to hear from advocate & ACE member Judy Fitzgerald as she shares her experience as an advocate on current vaccine trials. As always presentation will be short so bulk of the time can be spent on Q&A / discussion #OncoSky #Advocacy
True shared decision-making requires education and includes informed discussion on risks/benefits as well as IMPACT on quality-of-life. #CanSky #OncoSky #QoL
Kelly Shanahan@stage4kelly.bsky.social · 2y ago“Its not shared decision making if we [patients] are not informed” @amybeumer #SABCS24
Spent 90 mins on the #SABCS24 stage, interjecting the advocacy perspective in "From the Trenches" yesterday. It was these voices, and so many others not pictured, that I channeled. Grateful to have them by my side literally & figuratively 💗
ICYMI "We must rethink how we define progress in oncology" #Oncosky #Cansky #Pallonc
Jill Feldman@jillfeldman4.bsky.social · 2y agoInnovation shouldn't come at the expense of patient-centered care! Great article about prioritizing what matters to patients (QOL/OS/⬇️ burdens). It underscores palliative care being viewed as essential, not ancillary. We must rethink how we define progress in #oncology #pallonc #LCSM bit.ly/3OJQuQB
Thank you @coffeemommy.bsky.social ! #WordsMatter #oncsky #ListenToAdvocates @advocatecollab.bsky.social #oncologynursing
Stacey Tinianov, MPH@coffeemommy.bsky.social · 2y agoAdvocacy makes a difference 🎉 A week ago I shared w/ Dr. Alistair Thompson that "right-sizing treatment" is preferred terminology to "de-escalation." Latter can imply 'less than" which, in absence of strong health/disease literacy, can be terrifying. Today he shared that info his #SABCS24 preso
Love, love, LOVE how #advocate extraordinaire @coffeemommy.bsky.social of @advocatecollab.bsky.social reminds the moderator, the panel, and the audience that #WordsMatter - “deescalation” sounds like “you don’t matter, we’ll do less” so preferred terminology is “right-sizing”. #SABCS24
We finally made it to Instagram! We meet virtually, but every now and again, the stars align, and some of us can connect at events in person! In honor of our first IG post, here is a throwback to our first face-to-face at ASCO in 2023 🎉 #CanSky #PatientAdvocacy www.instagram.com/advocatecoll...
Are you a #cancer Patient, Research, Policy or Community advocate? Are you a person diagnosed w/ (or history of) cancer interested in advocacy but not sure where to start? We need your voice & would love to have you join us! #Cansky #oncosky #patientadvocacy advocatecollaborative.org/join-us/
It's our first #GivingTuesday as a non-profit 🎉 At Advocates for Collaborative Education, we are on a mission to unite and empower advocates through pan-cancer collaborations, advocacy education, and the sharing of best practices. If you're so inclined, we would love your support! #PatientAdvocacy
Check out @advocatecollab.bsky.social. They have a list of cancer advocates who are now on bluesky. #oncsky
Oooh! Here we have @advocatecollab.bsky.social advocates "collabing" in the wild!
Allison Rosen @arosen380.bsky.social · 2y agoAnytime I can get together with @coffeemommy.bsky.social is a treat! We met b/c of @advocatecollab.bsky.social and I’m so grateful for our friendship! One thing about cancer that surprised me was the instant friendships! We all just get each other & provide unwavering support when needed! 🫶
A good start as we try to rebuild our learning / sharing communities here (now #OncoSky was #MedTwitter) #bcsm #crcsm #btsm #lcsm #gyncsm #thyca #ayacsm #mmsm #cancer #QoL #PatientAdvocacy (Is #OncoAlert coming this way?!)
Stacey Tinianov, MPH@coffeemommy.bsky.social · 2y agoOkay, after tutelage from @joshuajfriedman.com via @megamidevice.bsky.social (THANK YOU!), I've turned my Oncology Advocates & Allies list into a Starter Pack. If I missed you (or your weren't here yet, let me know below and I'll add you) #MedSky #bcsm #crcsm #gyncsm #lcsm #mmsm go.bsky.app/2CrWvVs
