Early Clinical Investigators - crucial to ovarian cancer research

Last week, I was invited to speak about my advocacy work and my experience with ovarian cancer during the DOD Ovarian Cancer Academy . The Academy began in 2009 through the Congressionally Directed Medical Research Program Ovarian Cancer Research Program (CDMRP  OCRP). Dr. Michael Seiden stated  “the amount of science that needs to be covered to really get a global understanding of ovarian cancer is massive...it brings special opportunities for researchers... because there’s a lot of room to make a difference, but it also requires the ovarian cancer community to work hard to recruit young scientists, young clinical researchers into the field because we need more individuals to commit their time, energy, and talent to the problem.” The Academy is a virtual career development process which provides early clinical investigators (ECI) from the US and abroad with mentors, networking and peer support.  The leaders of the Academy (Dr Ronny Drapkin and Dr Kenneth Nephew) serve as a resource and foster collaboration among mentors and early investigators. 

On Wednesday,  I shared my story as a survivor and advocate along with advocates and survivors, Katy Loewy, and Rebecca Esparza.  I was honored to be given an beautiful advocacy award from the Academy. 

 

While I can't share the research ideas presented during the Academy, many of the proposals were basic research proposals that did not involve patients in clinical trials but research that took place in the lab using different models. There was an interesting discussion among the Academy leaders, mentors and ECIs regarding the use of different ovarian cancer cell lines, mouse models and patient tissue from tissue banks. I learned that it can take over two years to develop these models and this development is not covered by the grant proposals but must be funded by other means.

On Thursday,  I took part in a mock grant review. We reviewed an early investigator's grant proposal and then presented our evaluation as we would during an actual grant review meeting. I found the research avenues taken by these early career investigators can have a major impact on the lives of women with ovarian cancer. The mentoring by experienced investigators will help to keep a pipe-line of ovarian cancer investigators full and it gives me great hope for the future. I can't thank Drs Drapkin and Nephew for this amazing opportunity.

It was a beautiful day on Thursday. That afternoon I had the chance go to the top of the Space Needle. Spectacular views!

 

What a way to end such an amazing trip. 

Dee 

Every Day  is a Blessing!

A Day on the Hill

Along with other gynecologic patient advocates, I had the privilege of joining gynecologic oncologists from the Society of Gynecologic Oncologists in Washington, DC on Friday for their Capital Visit Day.

Thursday evening we had a training session during dinner. This training allowed us to learn the best way to ask our Senators and Congressmen/women to support funding for gynecologic cancer research.

On Friday, I headed to Capital Hill with Dr Ginger Gardner, a gynecologic oncologist from Memorial Sloan Kettering Cancer Center. We visited with the legislative assistants for Senators Menendez (NJ), Booker (NJ), Schumer (NY) and Gillibrand (NY) and Representatives Watson Coleman (NJ-12), Maloney (NY-12) and Frelinghuysen(NJ-11). 

As we introduced ourselves to each assistant I was able to share a bit about my ovarian cancer diagnosis and my participation in clinical trials. Then we moved on to our "asks".

Increased funding for gynecologic cancer clinical trials at the NCI/NIH 
In the past few years there has been a decrease in the number of NIH clinical trials available to women with gynecologic cancers.In 2012 there were 56 trials for gynecologic cancers while in 2016 there were 18 trials.
Here is the information sheet we left during our visits.

Preserve the Congressionally Directed Medical Research Program (CDMRP) at the Department of Defense
The Senate version of the National Defense Authorization Act of 2018 contains 4 sections (733, 891, 892, 893) which would basically eliminate the CDMRP. The CDMRP includes the Ovarian Cancer Research Program (OCRP). The House version of the bill does not include those sections.

There are currently 850,000 active duty female service members, wives and adult daughters. Approximately 11,800 will be diagnosed with ovarian cancer in their lifetimes at a cost of $971 million. 
The OCRP also includes the Ovarian Cancer Research Academy which  helps to develop young investigators to become lifelong ovarian cancer researchers.


We left this brochure, 

 (http://cdmrp.army.mil/ocrp/pbks/ocrppbk2017.pdf ) with each assistant. I recommend you read through it to see the groundbreaking basic research being done at the the OCRP.

I urge you to reach out to your Senators and the Congressman/woman from your district and ask them to support these crucial research programs. Thank you!


Dee
Every Day is a Blessing! 

Help Support the DOD Ovarian Cancer Research Program

I received an e-mail this morning from OCNA regarding the appropriations for the Department of Defense Ovarian Cancer Research Program  for fiscal year '15 .  I was happy to read that the author of the Senate Letter of Support for the $20M appropriation bill was no other than my NJ Senator , Robert Menendez. He has always been a strong supporter of cancer research.

If you are an ovarian cancer survivor, caregiver of an ovarian cancer survivor or family or friend of a survivor,  please click on this link (http://capwiz.com/ovarian/issues/alert/?alertid=63148556 ) , fill out this form ( a letter is already written for you) and send an e-mail to your Senator. Hurry... the Senator's signatures are required by 5pm on May 1st.

Thank you on behalf of all women diagnosed with ovarian cancer.


Dee
Every Day is a Blessing!

It Really is about Research Dollars

Over the holiday weekend there were many posts on facebook about Ovarian Cancer Awareness Month. I myself posted about hanging ribbons with the Lopez family in Edison. I have been hanging ribbons with them for over 5 years.

Then a friend posted her status. Let me paraphrase what she wrote.

I hope everyone out there hanging ribbons to raise awareness will work hard to lobby their Congressman to support cancer research funding. 

I agree with her 100%. It is wonderful to make women aware of the disease and its symptoms. This way women will get diagnosed at earlier stages. But we also need, dare I say even more than awareness,  the research to better understand the disease,  to develop a screening test for the general public and to better treat the disease. 

We need more federal dollars for research and more private research dollars. 

Lets look at the estimated FY 2013 NIH funding for 3 gynecologic cancers and HPV vaccine research provided by the NIH at

http://report.nih.gov/categorical_spending.aspx

Cervical Cancer - $113 million

Ovarian Cancer - $148 million

Uterine Cancer -  $  42 million 

HPV/ cervical vacccine - $ 26 million

Together they do not equal the $800 million for breast cancer research. Actually most other cancers get more federal research dollars. Only Pancreatic and Liver cancer get lower funding than the gynecologic cancers. 

There is also an Ovarian Cancer Research Program(OCRP)  as part of the Department of Defense (http://cdmrp.army.mil/ocrp/ ) . The DOD OCRP program has a $20 million budget for 2013. 

So when the time comes for research budget discussions please spend the time to e-mail or call your congressman to ask to increase the funding for ovarian cancer research. Or if a local ovarian cancer organization raises funds for research through walks or auctions or other events - make a donation.  

Ribbons matter but funding for research is the key to save women's lives. 

Dee

Every Day is a Blessing!

Susan, Women of Teal, Working for All of Us

In June at the ASCO conference I met Susan who was also a Research Advocacy Network © Focus on Research Scholar ©. She is an ovarian cancer survivor who has become an active ovarian cancer advocate.

I thought other survivors would like to read her profile ,Susan Leighton: 14-year Survivor of Stage IIIC Ovarian Cancer in the Department of Defense Ovarian Cancer on the consumer involvement page. Susan serves as a consumer reviewer for the Department of Defense Ovarian Cancer Research Program (OCRP) . My readers in Huntsville Alabama area might want to join her awareness activities and become active in Lilies of the Valley.

Congressionally Directed Medical Research Programs 2010 Report

The Congressionally Directed Medical Research Programs (CDMRP) is a program that funds research to eradicate diseases like cancer and to support those who fight for the US. Part of the CDMRP is the Ovarian Cancer Research Program.

The 2010 Annual report highlights the programs supported by CDMRP including Ovarian Cancer researchers like Dr. Zhen Zhang and Dr Nicole Urban.

Visit http://cdmrp.army.mil/ocrp/default.shtml for more information about the Ovarian Cancer Research Program ( OCRP).

The funding bill for 2011 should be signed into law soon. These researchers have made progress in fighting the disease and I look forward to seeing even more progress in the future.

Dee

Every Day is a Blessing!

Jersey Survivor to Speak to Federal Legislators

Karen Mason is a NJ resident, an ovarian cancer survivor and advocate for increased funding for ovarian cancer research. I've spoken to Karen at a few different meetings and admire her dedication to raise awareness and funds.

You can read an article about Karen and her trip to DC here.

Thanks Karen!

Dee
Every Day is a Blessing

Thank you Senators Menendez and Lautenberg -

Our NJ Senators, Menendez and Lautenberg, are two of only 15 Senators who have gone on record in support of increased funding for ovarian cancer research. The Dear Colleague letter, authored by Senator Menendez and Senator Snowe, asks for $30 million for the Department of Defense Ovarian Cancer Research Program in 2011.

Thank you Senators for your continued support !

Now for those outside of NJ ,who read this blog ,please check this OCNA page to see how you can call your Senators and ask them to support the Dear Colleague letter.
Time is running out ! Please make your call tomorrow April 7,2010.

Dee

Every Day is a Blessing!

Ask Your Congressman to Support the DOD's Ovarian Cancer Research Program

The DOD ( Department of Defense) supports a number of medical research programs. One in particular supports Ovarian Cancer Research. Congressmen De Lauro and Burton are asking their fellow Congressmen to provide support for the DOD's Ovarian Cancer Research Program. They are asking for $30 million dollars for fiscal year 2010.

The Ovarian Cancer National Alliance has made it easy for you to contact your representative and urge his or her support of this funding.

Click here , fill in your contact information and use the letter as written or better yet personalize it with how Ovarian Cancer has impacted your life.

I've sent my e-mail. Will you?

Livestrong

Dee
Every Day is a Blessing

DoD Appropriations Bill signed by President Bush

On September 30,2008, President Bush signed the DOD Appropriations Bill that includes $20 million for the Ovarian Cancer Research Program.
Thank you Congress and President Bush.

LIVESTRONG
Dee

DoD Appropriations Bill passed by House and Senate

The DOD Appropriation Bill is awaiting President Bush's signature. The Senate passed the bill on Saturday. The House last Wednesday.

Included in the bill is $20 million in funding of the Peer-Reviewed Ovarian Cancer Research Program and $6 million in funding for Gynecologic Cancer Research at Walter Reed Army Medical Center .

LIVESTRONG
Dee
Every Day is a Blessing