Honor Your NET Hero and Take Our Know Your NETs 2023 Planning Survey
Honor Your NET Hero and Take Our Know Your NETs 2023 Planning Survey

Honor Your Dedicated NET Hero 

We hear many inspirational stories about patients and families who are navigating their diagnosis and are dedicated to thrivership, thanks in part to the support of their NET doctors, nurses, and care team. In fact, in this month's newsletter we introduce you to NET patient, NET provider and NETRF board member Dr. Mark Lewis who is a real NET HERO who champions his own care as well as that of his patients. 

In honor of Doctor’s Day on March 30, we celebrate the care and commitment of these healthcare heroes by saying “thank you.” 

“I am so thankful for Dr. Halfdanarson and the entire team at the Mayo Clinic – we’ve come a long way since my diagnosis in 2021 and they have been right beside me supporting me and my family as we learn to live with this new normal.” - Brittany
Join Brittany – with a gift of any amount – to share your appreciation of your healthcare heroes today.

With your online donation, NETRF will notify the physician or provider who has made a difference in your life with a letter of gratitude and a certificate. Your gift will support vital NET research into better treatments for neuroendocrine cancer.

Last year, this meaningful day resulted in such heartfelt responses from the NET community. We invite you to join us again to honor your physician for Doctor's Day and support NETRF at the same time. Thank you.
Honor Your NET Hero!

NETRF 2023 Research Grant Opportunities Available 

NETRF invites grant proposals in basic, translational, and clinical research. Our portfolio addresses pancreatic, intestinal, bronchial, and adrenal NETs. We encourage collaboration between investigators with expertise in different fields and across institutions.
NETRF seeks to leverage advances in technology, bioinformatics, engineering, and molecular profiling to drive advances in NETs.

In 2023, NETRF is accepting applications for these awards:

Investigator Award is a two-year award totaling $270,000 USD.

Mentored Award is a two-year grant of $100,000 USD to encourage early-career investigators to make a commitment to NET research.

Pilot Award is a one-year award for up to $90,000 USD.
NETRF has a two-step application process which begins with submission of a brief letter-of-intent.

Letters of intent are due April 24, 2023 at 5PM Eastern.

To start a 2023 NETRF grant application, go to: https://proposalcentral.com

Questions? Email us at grants@netrf.org

ERF Call for Proposals 

The 2023 ERF/NETRF Nuclear Medicine Research Grant in NETs is sponsored by the Neuroendocrine Tumor Research Foundation through a generous grant from the Margie and Robert E. Petersen Foundation.

The Nuclear Medicine Pilot Research Grant in Neuroendocrine Tumors (NETs) is designed to help a basic or clinical scientist in the early stages of his/her career conduct novel and innovative research that may be leveraged to lead to further funding from other foundations, corporations or government agencies.

The grant will provide $100,000 for a two-year award. A second year of funding will be contingent on satisfactory first-year progress reports. Funds will be directed to the sponsoring institution. Funds may be used to support the salary of the applicant, research costs, and/or travel. Indirect expenses are capped at 5%.

The deadline for submitting applications is May 1, 2023, by 5:00 p.m. E.T. U.S.
More information on the application process can be found here.

Improving Diagnosis & Management of LungNETs 

In a new video to mark Rare Disease Day, scientists from the International Agency for Research on Cancer (IARC) present one aspect of the lungNENomics project, which aims to improve the diagnosis and clinical management of lung neuroendocrine tumours.
Led by Matthieu Foll, PhD, the lungNENomics project was recently awarded funding by NETRF.
Most lung neuroendocrine tumors tend to grow slowly, but a significant number are more aggressive, reducing the 10-year overall survival rate to 50%. 
"Receiving the NETRF investigator award is an opportunity to make a meaningful impact on a rare disease that may not receive sufficient funding otherwise. But beyond the financial support, NETRF creates a community of researchers who can collaborate, share ideas and work together towards a common goal," said Foll. 
Watch the IARC video here. 

Studying Cervical NETs to Identify New Treatments 

Dr. Haider S. Mahdi from the University of Pittsburgh Medical Center received a NETRF grant to study therapeutic vulnerabilities in gynecologic (cervical) NETs, an unmet need. These NETs are highly aggressive, treatment resistant and lethal, like other neuroendocrine carcinomas. Their preliminary data identify 14 cancer driver genes, so the first aim is to test novel therapies against these genes. Dr. Mahdi’s group has identified several targets for treatment, and his team will use mouse models to test treatments against some of the identified genetic mutations.
Dr. Mahdi's work is made possible with funding by the Martha O'Donnell Pagel Fund for Rare Cancer Research. 

Episode 24: Gynecologic NETs 

This episode of NETWise expands our series looking at all possible NET primary sites, with a conversation about one of the very rarest forms of NETs – those that originate in the female reproductive organs.
 NETRF is committed to expanding NET education resources and is incredibly thankful to be able to bring this much-needed resource to the NET community. 
Once you've listened to the podcast, test your NET knowledge by taking the LACNETS quiz, here.

An Easier Way to Find a Clinical Trial 

NETRF is here to help NET patients navigate the challenges of living with NET cancer. Participating in a clinical trial can be a part of your NET journey. However, navigating and finding clinical trials can often feel like an overwhelming experience. NETRF is excited to share a resource that has made finding NET clinical trials so much easier.

Ancora is a new clinical trials finder that uses technology and a patient-first approach to ease clinical trial access, so that every neuroendocrine patient has the best chance of recovery and leading a healthy life. Ancora provides unbiased clinical trial information by collecting information from public registries so that patients, their healthcare professionals, and their loved ones can evaluate all potential treatment options. 
Special thanks to NETRF Board Member Josh Mailman for his work with Ancora to ensure neuroendocrine cancer clinical trials are accessible to the NET community.

Thrivership Series: Lemons & Pearls

In this monthly series, NETRF's Director of Patient Education Jessica Thomas, LCSW, discusses the physical, emotional and social benefits of practicing gratitude.
Lemons represent our challenges, and pearls are those elements of beauty and peace that balance out the negative noise.
Watch the short episode here.

Know Your NETs 2023: What do You Want to Learn?

We're busy planning our 2023 Know Your NETs patient education conference for this summer and we want you to tell us what you want to learn! Please take a few minutes to complete this conference content survey and let us know what is important to you in NET patient education.

Weighing Surgery

Surgery can often play an important part in the management of NET cancer. Treatment decisions are not always easy to make and that includes surgery. Surgical options are influenced by a number of factors, including type of NET, size, location and extent of disease. There are side effects to consider and one should explore the benefit risk ratio of therapies and treatments for NETs. Knowledge is power and we encourage you to watch Risks and Benefits or Surgery by Dr. Xavier Keutgen from our 2022 KNOW YOUR NETs Patient Education Conference. Dr. Keutgen discusses things to think about when considering surgical resection, including different methods of tumor resection, complications based on primary site tumor site, considerations with metastatic NETs, patient safety and how decisions for surgery are made for NET tumors.

NETRF Board of Director Profile: Mark Lewis, MD

Mark is a special member of the NETRF community; he's a NET patient, a NET provider and a member of NETRF's Board of Directors.
Mark's personal experience with NETs (he lost his dad to NETs when he was just 14 years old), subsequently learning about his own diagnosis, and understanding his genetic predisputation to NETs has greatly influenced his approach to caring for his patients and how he talks about living with NETs.
Read more about Mark and his remarkable journey here.

Special Thanks to IPSEN for

Their Sponsorship

of this E-Update

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NET Research Foundation
31 St. James Avenue, Suite 365
Boston, MA 02116

(617) 946-1780 | info@netrf.org
The mission of the Neuroendocrine Tumor Research Foundation is to fund research to discover cures and more effective treatments for carcinoid, pancreatic, and related neuroendocrine cancers.

NETRF is a 501(c)(3) organization. All contributions are tax-deductible to the extent allowed by law. To learn more,
view our Audited Financial Statements and IRS Form 990.
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