NET Research Foundation Receives Transformational Gift from Margie and Robert E. Petersen Foundation

Funding to find cure for rare cancer affecting over 170,000 Americans

The Neuroendocrine Tumor (NET) Research Foundation today announced that it has received a major gift from the Margie and Robert E. Petersen Foundation to launch the most ambitious research effort ever undertaken to control and cure neuroendocrine cancers. Automobile publishing giant Robert E. Petersen passed away from this form of cancer, which is diagnosed in an estimated 12,000 Americans each year. It is the same disease that claimed the life of Apple founder Steve Jobs. The $15 million gift will provide $5 million a year for three years in funds and endowment to support research and investigators dedicated to a cure.

“A gift of this magnitude will greatly intensify the research that can be conducted in this rare disease space. With very little public funding for this type of research, a private gift of this magnitude is nothing short of transformational,” said Ron Hollander, NET Research Foundation Executive Director. “We are so grateful to the Margie and Robert E. Petersen Foundation. This is an exciting time for cancer research, as new treatments like Immunotherapy are having breakthrough results for many forms of cancer. We will be reaching out to researchers throughout the US and beyond to bring the best ideas and investigators to the cause of curing neuroendocrine cancers.”

Robert E. Petersen started and published magazines such as Motor Trend and Hot Rod Magazine and founded the Petersen Automotive Museum in Los Angeles. He passed away from neuroendocrine cancer in 2007. As he and his family experienced almost ten years ago, there is still too little known, few effective treatments and no cures available for these rare cancers.

“With this gift to catalyze our efforts, we must now build and sustain this new level of intensity until we see our cause through to completion,” said NET Research Foundation Board Chair, Carol Branaman.

NETs are rare and originate from specialized cells called neuroendocrine cells. NETs can occur throughout the body, but primary sites include the gastrointestinal tract, pancreas, rectum, lungs, and appendix. More than 170,000 people in the US are living with neuroendocrine cancers and the number of those diagnosed is increasing by more than five percent annually. Because symptoms often mimic those of other conditions, the majority of NET patients are initially misdiagnosed and the time from onset of symptoms to proper diagnosis often exceeds five years.

To date, there are few clues as to what makes these tumors form, change, and grow. For ten years, the NET Research Foundation has built, connected, and supported a growing community of researchers dedicated to breakthrough scientific research in the quest to cure neuroendocrine cancers. Since its inception, the NET Research Foundation has awarded over $12 million in large-scale, multi-year research grants to leading scientists at renowned research institutions, and 7 of the top 10 US cancer centers. The Margie and Robert E. Petersen Foundation gift will allow the NET Research Foundation to take the next step forward to advance its vital mission.

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Carol Piza
4 years ago

A very generous and greatly appreciated gesture.
Carol P.
NET patient

4 years ago

Fantastic news!

4 years ago

Congratulations to the entire carcinoid and neuroendocrine tumor community for this extraordinary donation. This level of financial support is certainly what has been needed to accelerate the results of research for these diseases. I hope this will be the first of many more significant gifts to bring about a more concentrated and focused effort to cure carcinoid and all the various forms of NETs.

Cheryl Turpin
4 years ago

Thanks to the foundation for their generous donation! Perhaps this will bring the much needed attention to this rare form of cancer.

Cheryl Turpin
Triathlete and NET Patient

4 years ago

Thank you so much for this very generous donation. We need and we must find a cure for this poorly understood cancer.

Bonnie Trenary – a pnet patient

4 years ago

Exciting News!! Thank you SOOO MUCH!!

Sue N
4 years ago

A heartfelt thank you from a very grateful pnet patient in Australia!!

Sara K
4 years ago

Such wonderful news.
Thank you so much to the Petersen Foundation.

richard hendel
4 years ago

May God bless the Petersen Family for being so generous in their determination to have a cure as well as more effective treatments for men and women with NET cancer. I look forward to following this exciting research.

Ljubinka Valesh
4 years ago

Thank you for your generous donation. You will help many.

Kathy Cobbett
4 years ago

With my heart full of gratitude for the generous donation from the Margie and Robert E. Paterson Foundation and to all those who dedicate their lives to researching for earlier diagnosis, better treatment and a cure for neuroendocrine cancers. Thank you. Another pnet.

4 years ago

So great news but sad he had to die with this rare form of cancer witch I have as well

Marilyn
4 years ago

How wonderful! This is remarkable and so greatly needed and appreciated! Thank you!

Barb
4 years ago

Thank You from all of us, that are fighting this fight

Carol Cannington
4 years ago

Thank you for your most generous donations! Hopefully, this will expedite the use of 68 Gallium Dotatate scans in the US. We are far behind European countries and must move forward in diagnosing primary and metastasis of Carcinoid/Neuroendocrine Tumors.

Carol
Carcinoid Patient

Pat
4 years ago

Thank You so much for such a generous gift and God Bless You. Funding for more in depth research is so badly needed for this “Orphan” disease that so many of us suffer from.

4 years ago

When i saw this i cried.I am fighting hard but no specialist in North Carolina.I want to move so i can do trials but i am alone.
I was nominated from the link above to help raise money cost free just needed votes no one was voting i designed a T-Shirt had to sell so many before they would print them could not get anyone to help me.I am alone and God Bless you for this.You truly are Angels and i am having 2 procedures done Monday in the hospital and i pray nothing happens.Thank you so much.Kimberly Cain

Jessica
4 years ago

Thank you deeply for your generous donation. Your gift will relieve much suffering and lengthen many lives.

Sarah
4 years ago

This is amazing my mum passed away suddenly of this rare cancer that was misdiagnosed she was diangnosed in September 2014 but because of the lack of knowledge n no specialist in this country she lost her fight in January 2015 and we live in England so this is amazing that this has happened and hopefully it will help with more research n help with all you other patients with this rare disease is love to do fund raising for this in this country to help raise money for more help in research n hopefully a cure eventually God bless this family ur amazing xx

Ann Terwilliger
4 years ago

I am overwhelmed with gratitude towards the Petersen Family, and The Margie and Robert E. Petersen Foundation’s generosity. Thank you for your incredible gift.
Ann Terwilliger; fellow Net Patient

Gary Bate
4 years ago

An amazingly generous gift to be sure. How are those funds dispersed? Is it purely research or will it be used to benefit patients who have a direct financial or other need? Last year I think Roche pharmaceuticals in their cancer treatment products alone had a profit of $50 Billion. May be they should chip in a few bucks too !

Duane Collie
4 years ago

What a great gift, I am glad to see it. This month I celebrate my ten-year anniversary of my surgical procedure by the great Dr. Michael Choti, who saved my life when others told me I was terminal. My cancer has never returned. For those of you that have it, there are success stories, of which I am one. The key is getting out of your comfort zone and getting to the right physician.

sally edmonds
4 years ago
Reply to  Duane Collie

my brother, just recently diagnosed. I have researched so much, but how did your dr. get rid of it. please contact me.
thank you for any info you can provide

4 years ago

What a wonderful and generous donation from the Peterson family. Thank you so much for caring and doing what most can not to find a cure for this disease.
With much gratitude,

Stephanie Marble
4 years ago

I want to add my thanks as well. Your generosity is deeply appreciated and will benefit so many.

Marilyn
4 years ago

Thank you! Thank you.

4 years ago

Aloha Nui Loa Dear Petersen Family! There is this beautiful quote :” always be kind to a stranger as you do not know how much suffering they are in.. what battle they are fighting” and YOU dear Petersen Family, even in your time of heartache and profound loss , you still reach out to help so many others! May your hearts heal and your memory of Mr Petersen always fill you with love and laughter and healing! My heart is swelled with joy and gratitude . As a grateful but sometimes scared metastatic NETS patient myself and a spokes person in film and commercial work for our community ( i was diagnosed 2013 – having been told for over 7 years i was fine- they finally had to remove 70 % of my liver with many inches of intestines and a couple of other organs… a very difficult complications as a result and now sadly new liver tumors – thankfully all only around 3 cm- and intestines and small in pancreas ) But my long winded point was this .. i once again i find my prayers are going out for others but now for myself too.. i really thought i had this beat .. but i am determined.. because of remarkable courageous people like you all.. and for Mr Petersen.. to find a way to keep going .. and we are so blessed today with all the great Oncologists and Nurses that have better understanding of NETS! . PLEASE FORGIVE my long email .. i am drunk with fatigue as we are working on our first episode for our series about LIVING LIFE ON PURPOSE WITH AND THROUGH CANCER… IN SPITE Of this beast! .. So if anyone out there is interested in sharing your story please contact us . SImpkinsfilms@gmail. And PLEASE know , we will shine a light on your site and all that you do! And bring awareness to more and more people about us rare ( perhaps not so rare) Zebras! Thank you for giving the rest of us a chance .. Thank you for helping these intuitive researchers.. finding a home and a hope for the Tireless and wondrous Researchers to work their magic… or, i should say, their BRILLIANT SCIENCE.. and ART! AND dear Dear Carol and all of your team at NET Research Foundation… thank you for ALL you do… your site saved me when i knew i had NETS and nobody would believe me. I felt i had found my home. WHen they finally DID get around to scanning me and found me lit up like a christmas tree as we say , i sent the oncology team to your site in hopes they would be more open for the next patient … I know how hard this work can be and you make it look easy with your grace, humor and kindness! Thank you for sharing such awe inspiring news with the rest of us.. congrats on your new site .. it is breathtakingly beautiful and crisp clean and CLEAR . YES!!!!! AND Thank you to the loss ( due to NETS) of such truly special people this year is heartbreaking .. yet the HOPE and The HELP and the HEALING that we can work toward, through awareness about NETS and by helping each other cannot take away our sadness for those who have gone before us BUT it can give us strength to carry the message and continue our work in raising awareness.. And if you dont mind i would like to invite those of you Brave NETS Patients and equally Brave Families and Friends ( care givers) to look at TOWER CANCER RESEARCH FOUNDATION in LA , Calf . Not only do they offer remarkably healing and helpful programs ( all FREE OF CHARGE ) we also have a Research Dept and Grants that are given yearly! Please , if you need a place to feel less alone, or a little more hopeful, check out their site and if in the area, please pop by .. you will be in loving hands! AND thankfully the team is up on the NEUROENDOCRINE so unlike so many places in this world, you will not get the blank stare or ” what neuro what????” …. .. I wish you all the best ! Much LOve and Malama Pono ( be well and be kind to each other! ).. again, please forgive my long email .. i promise the next one will be brief.. i wish i could blame my NETS on my lack of brevity. LOL? .. MUCH MUCH LOVE TO YOU ALL and please do not give up til the miracle happens.. many of us are lucky enough to bounce back over and over..and we get to help our others when we do no? Much Love and Great Gratitude … Love, Christina PS if i can be of help to anyone out there my email is above.

Martha
4 years ago
Reply to  christina

Thank you. I was diagnosed in 2007/NET/lungs. No treatment, no cure. Had a wonderful Dr.
Dr. Thomas Seay, Atlanta/Cumming, GA. I was diagnosed in 2008 with breast cancer. I had
a lumpectomy 1 cm cancer/right breast. I completed radiation/mammasite. However, I was
unable to be put “under” for that surgery, too prone to infections, atrial fibs,two bleeds/prior
wall of abdomen/from coumadin/side affect, and brain bleed as well/from fall. I feel as though
nothing is being done for the NET. However, I do not want an over-treatment scenario. I was
diagnosed in 1998 with rheumatoid arthritis fibro, psor. arthritis. I am so fatigue. I am not able to have
a knee replacement/ so I can not walk and ankylosing spon arthritis as well, degenerative spine. I am 68 years old in June, 2016. I was a hospital chaplan; and children’s trauma specialist- and also taught high school/prio. I want so badly to enjoy my granddaughters family and one precious great-grandchild on the way. I am so appreciative of this gift by this family. And I would like to tell my story. I have also been a hospice chaplain; and I love people, and so desire health and restoration for NET. love, Martha Smith, M.Div, B.A.

Lisa
4 years ago

I sure hope this helps find a cure. My 11 year old just had his right lung removed and it has spread to his lymph nodes. As a mom of a young boy I am overwhelmed with the uncertainty of this.

4 years ago

A very generous donation, indeed! Thanks to the family and foundation for this wonderful gift to the NET community. We need a cure!

Fellow NET patient, dx 2012

Skye
4 years ago

Great to hear there will be help for those with Pheochromocytoma & more importantly is to find out the reason why & how it’s caused would be great to know. I went to NIH & though they are doing millions in research, they couldn’t tell me or mention if they had any ideas on what causes the tumor.. Hum…. I wonder if finding the source of the tumor is a concern for your research? Just sayin*

Jane Forrest
4 years ago

Thank you one and all for the great work you are doing to raise monies for research into neuro endocrine tumours
Thanks so much
Jane Forrest

Paula Keifer
3 years ago

So excited about the generous donation. Looking for the best treatment facility for Metastatic Thymic Carcinoid.
We live in Mississippi. Any advice will be greatly appreciated.

Dave
3 years ago

I am grateful for your gift.