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@mpnrf.bsky.social

39 Followers  |  3 Following  |  97 Posts  |  Joined: 20.11.2024  |  1.7476

Latest posts by mpnrf.bsky.social on Bluesky

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August is Make a Will Month β€” the perfect time to protect what matters most and plan for the future.Β This year, consider including MPN Research Foundation in your will, trust, or estate plan.Β 

Link to: Planning Toolkit | https://plannedgiving.mpnresearchfoundation.org/planning-toolkit

06.08.2025 17:30 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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The August edition of β€˜β€œUnder the Microscope’” hit your inboxes at 5PM CT today!Β Β 
Join our community today to receive these stories and so much more with this link: https://mpnresearchfoundation.org/subscribe-to-our-newsletter/

05.08.2025 22:30 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Thousands of employers match charitable donations made by their employees, but most people never take advantage of it.Β  It only takes a minute to see if your employer matches - check today:Β 
https://mpnresearchfoundation.org/donate-to-mpn-research/Β Β 

#EmployerMatch #DoubleYourDonation #MPNResearch

31.07.2025 14:03 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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🧬 Essential thrombocythemia (ET) isn’t one-size-fits-all.Β 

Genetic mutations like JAK2, CALR & MPL impact platelet levels, clot risk & treatment. Genetic testing = better care decisions.Β Β 

Know your mutation, know your path.Β 

#MPNAwareness #GeneticTesting #ET

18.07.2025 14:02 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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πŸ† Big moment for MPNs: PV research took the plenary stage at #ASCO2025. Dr. Andrew Kuykendall presented VERIFY trial results on rusfertide:Β 

βœ“ 62% maintained Hct <45%Β 
βœ“ Better symptom controlΒ 
βœ“ Fewer skin malignanciesΒ 

#MPNs #PVawareness #Rusfertide #VERIFYtrial

17.07.2025 20:31 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Patients and caregivers play a critical role in shaping the future of MPN research. Join us for an empowering session exploring how your voice can influence every stage of research & drug development.Β 

Register now: https://us02web.zoom.us/webinar/register/WN_RqcXr7lLQZ-MVvpRae4SeA#/registration

17.07.2025 13:30 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Dr. Gabriela Hobbs, MD repurposes clinical trials that better serve patients. Learn how she’s turning every tissue sample into progress.

Read more: https://mpnresearchfoundation.org/news/every-sample-every-step-how-dr-gabriela-hobbs-is-rethinking-the-transplant-journey-in-mpns/

#MPNs @MPNResearch

16.07.2025 21:01 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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The Leukemia & Lymphoma Society (LLS) & MPN Research Foundation unite to provide clinical trial nurse navigation support.Β 

Get support today: https://mpnresearchfoundation.org/mpn-clinical-trials/

#MPNs #ClinicalTrials #Hematology #Oncology #PatientSupport #MPNRF #LLS

16.07.2025 00:45 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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πŸ“£ MPN Pathways: Empowered Voices in Research WebinarΒ 
Session 5: Patient and Caregiver Voices in ResearchΒ Β 

πŸ—“ Aug 14 | 5–6 PM CSTΒ 

Featuring Patty Spears, BS, FASCO – leading cancer research advocate.Β 

πŸ”— Register: https://goto.mpnresearchfoundation.org/4knHgqZΒ 
Β 
#MPN #PatientAdvocacy #MPNVoices

15.07.2025 21:04 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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MPNs are dynamic β€” new symptoms, changing blood counts, spleen enlargement.Β 

Even subtle shifts may raise the risk of disease progression, which looks different from patient to patient. Symptom tracking matters.Β 

#MPNs #RealWorldEvidence #Myelofibrosis #PV #ET @MPNResearch

14.07.2025 19:02 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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20 years after her ET diagnosis, MJ Tooey’s journey is one of research, resilience & trust. From treatment setbacks to advocacy wins, her care team partnership made all the difference.Β Β 

Read her story here: https://mpnresearchfoundation.org/patient_stories/mj/

#MPNs #PatientVoice #MPNCommunity

11.07.2025 20:02 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Pruritus = 2nd most common symptom in #PV + #ET, 4th in #MF (2024 MPNRF Unmet Needs Survey). Once seen as PV-only, we now know itching affects all #MPNs β€” and it’s underrecognized. It can impact sleep, mood & clot risk.

It’s time we take it seriously.
#MPNsymptoms #BloodCancer

02.07.2025 21:02 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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#MPN cells may resist #JAK2 inhibitors by rerouting growth signals. Combining ruxolitinib with other pathway inhibitors could block this escape route and delay resistance.
Β 
Sources: (Meyer & Levine, 2014; Stivala et al., 2019; Schnoeder et al., 2021; Brkic et al., 2021)

28.06.2025 20:00 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Living with myelofibrosis (MF) in the U.S.?Β 

Take a 5–7 min survey to share your experience and help improve MF community support!Β 

πŸ“ https://www.tfaforms.com/5183605Β 
πŸ”’ Confidential & for researchΒ 
Learn more: mappingmf.com
Β 
#Myelofibrosis #MPN #MappingMF

26.06.2025 20:31 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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We are sharing a new #CME activity fromΒ @Medscape. It is designed to help you apply evidence-based strategies when caring for patients with #myelofibrosis (MF).

Let the #MF experts guide you through choosing the best therapies for complex cases! https://goto.mpnresearchfoundation.org/4gN7XTu

25.06.2025 23:02 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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πŸ‘ We’re proud to support the #MPNHeroes Recognition Program by @VoicesofMPN.

This year, MPN Research Foundation’s Director of Patient Engagement, Sara Douglas, was honored to serve as a judge β€” helping recognize the inspiring contributions of this year’s heroes.

#MPNCommunity #PatientAdvocacy

24.06.2025 18:02 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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πŸ’‘ Only 48% of MPN patients feel they have enough emotional support.

Living with an MPN is emotional, not just physical. No one should face it alone.

Explore support resources: https://mpnresearchfoundation.org/subscribe-to-our-newsletter/

#MPNAwareness #PatientSupport #MentalHealthMatters #MPN

20.06.2025 20:30 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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We’re celebrating 25 years of MPN progress by honoring our founder, Bob Rosen. πŸ’™Β 

Join our webinar tomorrow to learn how you can support the next 25 years of life-changing blood cancer research.Β 

5 PM CTΒ 
https://goto.mpnresearchfoundation.org/402Cjfd

#MPNResearch #LegacyGiving

16.06.2025 13:02 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Why do some MPNs progress?Β 

Scientist like Dr. Anandi Krishnan measure MPN mutant cell dysfunction to get answers: β€œQuality control is gone” β€” like β€œa factory where the pace has increased so much that the protein folding machinery is going awry.” 

#MPNProgression #MPNs

13.06.2025 21:02 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Young. Thriving. Overlooked.

Dana Turner is redefining what it means to live with a myeloproliferative neoplasm (MPN) β€” and why younger patients must be seen and heard.
Β 
Join our community and read her story: https://mpnresearchfoundation.org/subscribe-to-our-newsletter/
Β 
#MPN #PatientVoices

12.06.2025 14:00 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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What do kidneys have to do with #MPNs?

A clinical trial hold-up led Dr. Brandi Reeves to a new theory: MPNs may trigger silent kidney damage through clotting signals in neutrophils.

She's testing it. πŸ”— Read more: https://goto.mpnresearchfoundation.org/4kNfjsw

#MPNChallenge @UNC_Health #hematology

11.06.2025 17:02 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Join us today, 5–6 PM CST for FDA 101 β€” a crash course on how the FDA works and how MPN patients & caregivers can engage in the drug approval process. Featuring FDA expert Sarah Wicks.Β 

πŸ”— Register: https://goto.mpnresearchfoundation.org/4knHgqZΒ 

#MPN #FDA101 #PatientVoices #DrugDevelopment

05.06.2025 16:30 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Meet Andrea Spica: MPN patient and 7-year post-transplant recipient turned advocate.

From clinical trials to @MPN_RF Patient Impact Council, her journey fuels hope, research & support for others.

Read more: https://mpnresearchfoundation.org/patient_stories/andrea/

#MPNAdvocate #PatientSupport

04.06.2025 15:02 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Thank you to everyone who donated to #FoundationForward β€” you're powering patient-driven research and honoring Bob Rosen’s legacy.Β 

⏳ Today’s the last day to give.Β 

Let’s finish strong.Β 
πŸ“₯ Donate now: https://goto.mpnresearchfoundation.org/4js24x1Β 

#MPNResearch #RareDisease #LastDayToGive

31.05.2025 15:02 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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25 yrs ago, MPNs had no research roadmap.

Then came Bob Rosen.

His first grant helped lead to the discovery of JAK2 in 2005 β€” a breakthrough that changed everything.

We're moving #FoundationForward.
Join us: https://goto.mpnresearchfoundation.org/425ellc

#MPNResearch #RareDisease #BobRosenLegacy

30.05.2025 15:02 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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MPN patients + caregivers: Join us June 5 for FDA 101, a free webinar on how the FDA approves treatments β€” and how YOU can get involved. Recording included!Β 

⏰ 5–6PM CT
πŸ”— Register: https://us02web.zoom.us/webinar/register/7917435180461/WN_MSZktPYUQpmI_vLodw38ogΒ 

#MPNVoices #FDA101 #MPNPathways

29.05.2025 18:01 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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72% of MPN patients are unaware of the MPN 10 symptom-tracking tool.Β 

We're moving #FoundationForward by raising awareness.Β 
πŸ’¬ Ever used it? Heard of it? Tell us below!Β 

πŸ“₯ Subscribe for updates: https://mpnresearchfoundation.org/subscribe-to-our-newsletter/
#MPNResearch #RareDisease

28.05.2025 14:02 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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627 voices. 31 countries. 1 shared mission.Β 

From Bob Rosen’s vision to global momentum β€” the global response to our Unmet Needs Survey is shaping the future of MPN research.Β 

πŸ‘‰ Reply with your countryΒ & join the movement.

27.05.2025 17:00 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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In 1997, Bob Rosen was diagnosed with PV β€” and found no roadmap. So, he built one.Β 

25 years later, we’re moving #FoundationForward, empowering patients with research, resources, and support.Β 

πŸ“₯ Join our community: https://goto.mpnresearchfoundation.org/425ellc
Β #MPNResearch #RareDisease

25.05.2025 15:01 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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What’s a citation trail?Β It’s when one study sparks another β€” and another...Β 

MPN Research Foundation has funded research with rich citation trails that stretch from years ago to today’s most promising advances.Β 

Join us: https://goto.mpnresearchfoundation.org/425ellc
#MPNResearch #CitationTrail

23.05.2025 17:01 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

@mpnrf is following 3 prominent accounts