June, 2019
MPNRF Under the Microscope
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It is important that we stop to reflect from time to time, and today we are lookin
g back
at the 2018 fiscal year. Our
Annual Report
provides an opportunity to inform our community in mo
re detail about our work. In addition to a report on how we invested our funds during the 2018 fiscal year, this year's Annual Report recognizes the thousands of individuals who s
upported our mission with a gift December 1, 2017 - November 30, 2018.
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Would you like your name to appear in the 2019 Annual Report as a supporter of our mission?
Make a gift today!
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Rare Disease Advocacy Summer 2019
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Summer is here and Rare Across America has a unique opportunity to connect Members of Congress with their constituents who are living with a rare disease such as Polycythemia Vera, Essential Thrombocythemia and Myelofibrosis. Their program sets up meetings with advocates and Members of Congress or their staffers for a discussion on something YOU know well: what it is like to live with an MPN and what Congress could possibly do to help.
No experience is necessary, and Rare Across America will prepare and train you for these meetings. Remember: no one knows your experience as a person with an MPN better than YOU! By connecting with your member of Congress you give a voice to the hundreds of thousands of people living with an MPN nationwide.
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5th Annual Women & MPN Conference
September 6, 2019
Boston, Massachusetts
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Over the years, it became evident that the challenges endured by females with myelofibrosis, polycythemia vera, and essential thrombocythemia were particularly difficult. MPN Advocacy and Education International created a Women & MPN program to address those unique issues and encourage further exploration into issues facing women with MPNs. An annual conference focused on Women and MPN discusses the most up to date research and available resources and provides a venue for open dialogue between patients, caregivers, and experts.
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Sierra Oncology
announced that the U.S. Food and Drug Administration (FDA) has granted Fast Track designation to momelotinib, a JAK1, JAK2, and ACVR1 inhibitor, for the treatment of patients with intermediate/high-risk myelofibrosis.
According to the
FDA
, "Fast track is a process designed to facilitate the development, and expedite the review of drugs to treat serious conditions and fill an unmet medical need. The purpose is to get important new drugs to the patient earlier. Fast Track addresses a broad range of serious conditions."
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Drug
: CPI-0610
Company
: Constellation Pharmaceuticals
Study name
: A Phase 2 Study of CPI-0610 With and Without Ruxolitinib in Patients With MF.
Enrolling
: Patients with confirmed diagnosis of MF, DIPSS category of intermediate-1 or higher and Peripheral blood blast count <10%
To learn more click
here
.
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Drug
: PU-H71
Company
: Samus Therapeutics, Inc.
Study name
: A Phase 1b Study to Assess the Safety, Tolerability of Oral PU-H71 in Subjects Taking Ruxolitinib.
Enrolling
: Patients with confirmed diagnosis of PMF, Post-PV MF, or Post-ET MF, has been receiving ruxolitinib therapy, and evidence of evaluable residual burden of disease.
To learn more click
here
.
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MPN Updates from ASCO 2019
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On June 4, the American Society of Clinical Oncology wrapped up their 2019 ASCO meeting held annually in Chicago, IL. Although ASCO does not focus solely on blood cancers, there were several updates pertaining to MPN related science. To read the abstracts of these updates, follow the link below.
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Have you started your journey with myMPN yet? myMPN is an online registry for patients with ET, PV, and MF to share their stories and have a direct impact on MPN research. The data contributed by our community has been used in research to expedite the development of targeted disease therapies. Join today and be a part of the myMPN movement!
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There are several patient and caregiver events coming up in the month of July! Head over to our
MPN Community Calendar
on MPNRF's website and check out the many educational meetings and webinars taking place!
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Do your shopping at
smile.amazon.com
and a percentage of what you spend will be donated to charity. Make sure to select the MPN Research Foundation as your institution of choice!
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