Our Biggest Conference!
Thank you to all our speakers, sponsors, and attendees who helped to make KNOW YOUR NETs 2023 a great success! We appreciate the feedback you provided to help shape the agenda for this conference, the largest virtual program since NETRF began KNOW YOUR NETs in 2020.
If you registered for the event and want to view it again, please know that we will soon be sending out a link so you can access the full conference recording.
If you did not register for the conference but would like to sign up to view the conference online, please go here to receive a link to view the full conference.
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NETWise Episode 26 Update: Lung NETs
version of our Lung NETs podcast. Special thanks to Dr. Aman Chauhan for his expert knowledge and help with this NETWise update.
Did you know that about 1 in 4 NETs develop in the lungs?
Lung NETs are often overlooked, less frequently discussed, and more misunderstood than NETs that begin in the pancreas or GI tract. It can be frustrating for individuals and families living with a Lung NET to find useful information or the right health care professional to work with. This special episode of NETWise covers all things Lung NETs.
Do you want to learn more about the classification of the different types of Lung NETs? In this episode, we map out the Lung NET classification system. While we mainly focus on typical and atypical carcinoids, we also included information about large cell and small cell lung cancer. We talk about each different type of Lung NET, their distinctive characteristics, and what they have in common. We did not forget about DIPNECH. Information about this ultra-rare condition is also included in this episode.
This episode is for every person and family affected by Lung NETs. We hear your call for more information. After you listen to this episode, you will have a better understanding of the classification system of Lung NETs, surgical options (including the controversial ones), medical treatments, and how you can get involved with research to advocate for more approved treatment options.
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Patient & Caregiver Conference Set for September 23rdin Austin, Texas
NETRF is thrilled to announce our first in-person patient & caregiver education conference of 2023 to be held on September 23rd in Austin, Texas, at the Frank Fickett Scout Training and Service Center.
We have opened registration for this event here, and are busy working on the conference presentations. We will update you with agenda items soon. Register soon, and we look forward to seeing you in Austin on September 23rd!
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Happiness & Your Brain
July's Thrivership Series is about happiness and the four main brain chemicals: dopamine, serotonin, oxytocin and endorphins.
How do they play a role in how you experience happiness? These four primary chemicals can drive the positive emotions you feel throughout the day. Each of these chemicals plays a huge part in the way our bodies function mentally and emotionally. Watch the thrivership video here.
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NETRF'S New NET Knowledge Center
Have you visited our new NET KNOWLEDGE CENTER? This center is a newly revamped and re-organized central starting point for patients looking for information about all things NETs.
We've organized the NET KNOWLEDGE CENTER in three tiers: Information, Engagement and Community.
Check out the new center here, and let us know what you think by emailing us here.
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NETRF Funded Researcher Develops Treatment Platform for Targeting NETs
Justin Annes, MD, PhD, Associate Professor of Medicine at Stanford University, and recipient of a NETRF Pilot Award and Investigator Award, has built a pioneering platform technology to create chemotherapeutic treatments for neuroendocrine tumors with fewer side effects, increased tolerability, and better response.
Because of the early funding of these studies by NETRF, this work has led to a partnership with Intonation Research Laboratories to further develop treatments targeting neuroendocrine tumors. This collaboration will ideally accelerate the translation of this research into a therapy that improves patient care. Read the press release here.
“I am extremely grateful to NETRF for the critical role they played in supporting our development of a 'smart' platform technology for selectively targeting therapeutics to neuroendocrine tumors," said Dr. Annes. "Regrettably, there is a dearth of funding for high risk-high reward research endeavors with the potential to improve patient care and transform the neuroendocrine tumor treatment landscape. Fortunately, NETRF recognized the potential impact of our work and supported us with a Pilot Award (c. 2018) and an Investigator Award (c.2021), after we demonstrated strategic feasibility. Although we still face many hurdles before we have a clinic-ready therapeutic in hand, our collaboration with Intonation Research Laboratories will greatly accelerate our progress. This collaboration, and hopefully our success, would not have been possible without NETRF.”
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NETRF & ERF Award Pilot Grant to James Inkster, PhD
NETRF, in partnership with the Education and Research Foundation for Nuclear Medicine and Molecular Imaging (ERF), is pleased to announce that Dr. James Inkster, Assistant Professor of Chemistry & Chemical Biology at McMaster University in Ontario, Canada, has been awarded a Nuclear Medicine Pilot Research Grant. Dr. Inkster will develop better synthetic chemistry techniques to create Fluorine-18 radiopharmaceuticals. Fluorine-18 exhibits strong PET imaging characteristics, and this grant seeks to improve and expand the clinical utility of Fluorine-18 imaging for NET diagnosis, staging, and evaluation of therapeutic efforts. Learn more about Dr. Inkster’s project here.
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Paul Queenan, second from left, rallies his community in support of NETRF
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Queenan Family
Drives Support for NETRF
On June 23, 2023, Paul Queenan and his family hosted their 23rd annual charity golf tournament at Hyannis Golf Course in Massachusetts. This year, the family honored Carolyn Queenan, Paul’s wife of 32 years, who passed away from neuroendocrine cancer in February. With a sellout field of 144 players enjoying the beautiful Cape Cod day, the event raised nearly $5,000 for NETRF.
“Our goal is not only to raise money for needed funding of drug trials---we need to raise awareness of this sneaky, often misdiagnosed cancer,” Paul said.
We are grateful to Paul, his family, and his wonderful community for their support. If you would like to host a fundraising event to benefit NETRF, please contact Laken Baird at laken.baird@netrf.org.
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Thank You for Multiplying our Impact!
Last month, Dr. Joseph Li and the Li Family made a very special announcement - they pledged to match each donation to NETRF up to $15,000!
We are so grateful to you, our dedicated community of supporters, for joining the Li Family. Thanks to you, together we surpassed their goal, raising an incredible $47,470!
In total, we received more than 121 donations from friends in 31 states and three countries, with gifts ranging from $25 to $5,000!
Thank you for your wonderful generosity. And, a very special thanks to Dr. Joseph Li and the Li Family for their leadership gift!
Every donation multiplies new pathways to NET discoveries and helps patients and their families thrive.
Thank you!
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| Thank You to IPSEN For Sponsoring This E-Update
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