Friends of Essential Thrombocythemia, Inc dba Friends of ET Research

09/02/2026

Folks, Besremi, which is now approved by the FDA for treating ET, took 30 years! It is the first medical treatment for ET FDA approved in 3 decades. Change sometimes doesn’t happen as fast we need it to, but, here we are. FINALLY! So much to be grateful for.

https://www.bioreview.com/fda-besremi-approval-essential-thrombocythemia/?fbclid=IwdGRleAUFkFFwZG9mBWZkaWQWUNorAWuKmgsJ9kHOptFzLfxWdfYh02V4dG4DYWVtAjExAHNydGMGYXBwX2lkDzE3Mzg0NzY0MjY3MDM3MAABHsJ4sU-4xSxmzktG8XznOqn96B0e8kJGNC4LvyeYs0a2SCVLSj-TRgNKGo9Q_aem_V-uSZDV15BZsNQ6Najtuqw

After nearly three decades, hematologists finally have a new tool. BESREMi represents a paradigm shift in ET treatment—from symptom management to molecular remission.

09/02/2026

A huge event for ET patients in the US. The FDA has finally approved Besremi as a treatment for ET. Been waiting for this a long time! It’s pricey but effective!

https://www.patientpower.info/myeloproliferative-neoplasms/fda-approves-first-essential-thrombocythemia-drug-in-nearly-30-years?fbclid=IwdGRleAUFHOFwZG9mBWZkaWQWUNrc9e0WooGYxceb6hsH5Xu588suj2V4dG4DYWVtAjExAHNydGMGYXBwX2lkDzE3Mzg0NzY0MjY3MDM3MAABHmXtXKSUzswggdhY_40xyzLX6M7JTNFfqN3gG1CedRVuVCGPePuAMO6tOooP_aem_w8KqY8F98G3RQUiJdKnx2Q

The FDA has approved ropeginterferon alfa-2b for essential thrombocythemia, the first new treatment for the rare blood cancer in nearly 30 years. Learn more about this groundbreaking therapy and its potential impact on patients.

08/31/2026

September is Blood Cancer Awareness Month. Here’s to all of you battling myelo-proliferative blood cancers! Feel free to copy these photos and post them yourselves to help raise awareness for the bone marrow cancers.

08/27/2026

A full recoding of the MPN Advocacy and Educational Patient Workshop of the Carolinas:

MPN Advocacy & Education International hosted a webinar with MPN Sp...

08/19/2026

Here is a video recording of the recent MPN Research Foundation’s Be Part of the Solution: Raise Awareness of MPNs webinar. Both myself and my daughter, Stephanie, were invited to share our stories regarding her diagnosis at the age of 16, and the subsequent founding of Friends of ET Research to begin raising funds in our local community. I hope our stories will inspire you as well!

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

08/15/2026

A new 3 year study on Ropeginterferon Alfa-2B vs. Anagrelide indicates that early intervention with ropeginterferon has positive benefits, including platelet control, molecular responses, and a lower risk of thrombotic events such as blood clots or bleeding.

Patients diagnosed with high-risk essential thrombocythemia (ET) have limited treatment options to reduce the risk of thrombosis and lessen the progression of the disease by targeting the molecular...

08/03/2026

An invitation for you to join our webinar on Thursday. BE PART OF THE SOLUTION! Join us if you can!
Click on the link below to register.

I invite you to participate in the MPN Research Foundation’s webinar on August 13 at 3 pm EDT. BE PART OF THE SOLUTION: RAISING AWARENESS FOR MPNs.

I will be a featured guest, as will my daughter, Stephanie. I hope you can join us.

Use this link below to register. It is free of course!

Join us for a community‑wide webinar bringing together patients and caregivers, researchers and clinicians, and partners across the biopharmaceutical industry as we prepare for a powerful month of awareness and action focused on myeloproliferative neoplasms (MPNs). This year’s theme — Be Part ...

07/13/2026

New study indicates inhibiting menin may be a promising new treatment for MPNs! This is a big breakthrough on the research front. Paper published on July 9, 2026.

https://www.stjude.org/media-resources/news-releases/2026-medicine-science-news/inhibiting-menin-to-treat-myeloproliferative-neoplasms-shows-preclinical-promise.html?fbclid=IwdGRleATCIqVwZG9mA2ZkaWQWUKcSz5M73iYRbCYMSt2MVrCa8Se9jWV4dG4DYWVtAjExAHNydGMGYXBwX2lkDzE3Mzg0NzY0MjY3MDM3MAABHuvGl1GLVePTYvVVMNsRTSxpnlk5sm_PesGTeBDcWIyxG4_Vt9M2kdTgn3c7_aem_ohLA01ChDUiNaKBvIIJT7g

Find how the blood cancers without effective treatments showed a selective vulnerability to the drug, providing a new potential therapeutic avenue to explore.

06/28/2026

From MPN Support Group: For ET and PV patients being treated with HU. Here is a link to participate:
https://survey.opinionhealth.co.uk/uc/19056Q/ospe.php?SES=aa64dcde027859c52e8bc773c3521492&syid=67849&sid=67850&act=start&js=15&flash=0&devicetype=0

“Participate in Medical Research Survey for PV and ET Patients treated with HU”

We are supporting a medical research survey for US based patients diagnosed with Essential Thrombocythemia (ET) or Polycythemia Vera (PV) treated with HU.

Eligibility:

- Diagnosis of ET or PV (NOT MF!)

- Living in the United States

- Currently receiving treatment

Compensation: $25 gift card or PayPal for 30 minutes online survey.

Click on the link below to participate:

https://survey.opinionhealth.co.uk/uc/19056QAN/?a=1&b=AN&c=FM&d=