50 States of Teal

In 50 States of Teal: Ovarian Cancer Care Across America OCNA has evaluated the performance of each state in the US in 10 areas of ovarian cancer care. The metrics include prevention, treatment, survivorship,  and end-of-life care.

New Jersey scored 8 out of 10 and better than 42 other states.

 

For the complete report on NJ please visit http://www.50statesofteal.org/state/NJ 

Dee

Every Day is a Blessing! 

Reaching out to the Halls of Congress from NJ

This morning many of my fellow Ovarian Cancer survivors  will be heading to Capital Hill to talk to their Senators and Congressmen. Although I am unable to make the trip this year, I did send e-mails to NJ's senators and my representative.

Here is the e-mail I wrote:

I am a NJ resident and 7 year Ovarian Cancer survivor thanks to the
doctors at the Cancer Institute of New Jersey. Although I am not able to
visit you in person today,  I am requesting that you support the Ovarian
Cancer National Alliance's initiative to fund innovative research;
increase awareness and ensure parity in drug coverage for ovarian cancer
patients.

* Recognize Ovarian Cancer Awareness Month by becoming a sponsor of the
House Resolution; contact Molly Ahearn in Representative Israel's office.

* Support appropriations of $20 million for the Ovarian Cancer Research
Program for Fiscal Year 2013.

* Become a co-sponsor HR 2746, the Cancer Drug Coverage Parity Act.

Taken together, these actions will help our nation make progress toward
identifying ovarian cancer at its earliest stage and reducing mortality
from the disease.

Sincerely

If you get a chance please go to this site and send your senators and representatives an e-mail urging their support.

http://www.capwiz.com/ovarian/issues/alert/?alertid=61558216&type=CO


Dee
Every day is a Blessing!

Survivors Teaching Student Program - OCNA

I know that I have readers from all over the country who are OC survivors. You can help future health care practitioners learn the symptoms of ovarian cancer and diagnose it earlier by sharing your story. Please consider becoming a volunteer with the Survivor Teaching Students Program now being coordinated by my friend , Susan Leighton.

We all have a story to tell! Did you know that the Ovarian Cancer National Alliance has a program that gives you the chance to tell your story while educating future doctors, nurses, nurse practitioners, and physician assistants? Survivors Teaching Students: Saving Women’s Lives® is an innovative educational program through which future healthcare professionals increase their understanding of ovarian cancer symptoms and risk factors so they will be able to diagnosis the disease sooner. Sharing your story and relating it to the risks factors and symptoms of ovarian cancer puts a face on the disease. It truly makes an impact on the students. Ask anyone of the hundreds of women nationwide who volunteer their time to make this program a success why they participate, and you will hear how rewarding it is to know they are helping women who will be treated by these students in the future. The reaction of the students to our stories is empowering! We need volunteers throughout the country. Training is provided. If you are ready to help, please email me, sleighton@ovariancancer.org. For more information, please visithttp://www.ovariancancer.org/about-us/survivors-teaching-students/

Dee

Every Day is a Blessing!

Keep Track of Symptoms

The Ovarian Cancer National Alliance has developed an app easily accesible on your mobile phone to help women keep track of the symptoms of ovarian cancer.

Watch this video for more information.

Go to

http://www.ovariancancer.org/app/

on your phone and sign-in to get this free app.

Works on iPhone, iPad, Blackberry, Android and all desktop computers

Dee

Every Day is a Blessing!

Petition to End Ovarian Cancer Drug Shortages

In the past few months I have written about chemotherapy drug shortages. I personally know three women whose chemo has been changed or delayed because of the doxil shortage.

Just imagine getting a cancer diagnosis and learning that the drug that could eliminate the cancer is unavailable.

Please go to this petition site sponsored by OCNA and sign the petition. I did!

Dee

Every day is a Blessing!

Speaking for all Ovarian Cancer Survivors

I had the pleasure of meeting Susan Leighton when I attended the ASCO meeting in June. Susan was also one of the Focus on Research Scholars ©. With our common focus on ovarian cancer research and our we attended many of the same sessions and quickly became friends.

Susan was asked by the Ovarian Cancer National Alliance to represent all ovarian cancer survivors and provide testimony to the Senate Appropriation Subcommittee on Defense. She was urging the subcommittee to provide flat funding of $20 Million for ovarian cancer research. You can read her own words here. There was also a nice article on the website Alabama Live regarding her appearance on Capital Hill.

Way to go Susan!

Dee

Every Day is a Blessing!

BEAT comes to the US

Back in February of this year I wrote about the BEAT Campaign in the UK which is the awareness campaign for OVACOME. ( Bloating, Eating , Abdominal , Talk)

I just knew it was a catchy way of remembering symptoms. OCNA, NOCC, GCF and OCRF launched a "Recognize the signs & BEAT Ovarian Cancer Campaign" ( Bloating, Eating, Abdominal , Trouble) for September , Ovarian Cancer Awareness Month in the US. See the poster above.

I hope to hear that the BEAT campaign has made a difference in raising awareness of the symptoms of OC. Women need to know what symptoms to look for- and remember all women are at risk for OC - young, middle age and mature.

Dee

Every Day is a Blessing!

The United States of TEAL

OCNA has a new program called United States of Teal. The goal is take the fight against ovarian cancer to all 50 states. The state legislators are asked to take a pledge and try to do some simple things such as wear teal, write about ovarian cancer, or submit a statement into the record. Survivors and caregivers can help get their state teal by following the steps given on the website by clicking on Take Action. Let's do it NJ!

Check out how TEAL the country looks here. I hope by September - Ovarian Cancer Awareness Month in the US that the entire country will be teal.


Dee
Every Day is a Blessing !

Thank You President and Mrs Obama

This article lists the charities that President and Mrs Obama donated to in 2009.

I was pleased to read that the Obama's donated $15,000 to the Ovarian Cancer National Alliance(OCNA).

Thank You President and Mrs Obama.

Dee
Every Day is a Blessing!

Another Kaleidoscope

Here is some info from OCNA about a great TV show to raise awareness about women's cancers. IF you are in the DC area and are an Ovarian Cancer survivor you can order discounted tickets through OCNA.

Kaleidoscope is a holiday entertainment variety special featuring Olympic skating champions and GRAMMY Award-winning music artists. Viewers will be thrilled with the historic return of the legendary Scott Hamilton and Dorothy Hamill matched with fellow cancer survivor Olivia Newton-John.

Kaleidoscope addresses issues surrounding women and cancer through an extraordinary collaboration with 10 advocacy partners.

The LIVE event will be held Monday, November 16, 2009 at the Verizon Center in Washington, DC.

There is no charge for the tickets, but a $2 Ticketmaster convenience fee is required for each ticket ordered on line. To order your tickets for the live performance at the Verizon Center in Washington, DC, click here and insert the passcode OCNA into the Promotions and Special Offers Box.

In an effort to raise awareness about ovarian cancer, if you and/or your family and friends are attending the LIVE event, we ask that you please wear TEAL. Hope to see you there!

The other causes supported by the show include- ASCO, NCCS,ONS, C3, GCF, OCNA , the Leukemia and Lymphoma Society.


LiveSTRONG

Dee
Every Day is a Blessing!

OCNA introduces Symptom Diary

Here is information that I received in an e-mail from the Ovarian Cancer National Alliance.

"In a bold effort to provide women and their doctors with better information about how and when to take the necessary steps to obtain an early diagnosis for ovarian cancer, the Ovarian Cancer National Alliance has taken the lead in posting guidance for diagnoses on its web site. The Interim Practice Guidance, endorsed by prominent specialists in the field of gynecologic cancer, marks the first time ovarian cancer diagnostic protocols have been made available to the public. In addition to the guidance, a Symptom Diary that helps women measure the persistency and severity of their symptoms (initially developed in the United Kingdom by Ovarian Cancer Action), has been reproduced in conjunction with the Gynecologic Cancer Foundation, with permission for use in the United States.

For the full article and a downloable Tool Kit, visit www.ovariancancer.org/diary."

This is a excellent way for women to record their symptoms and have those important conversations with their doctors,

LiveSTRONG
Dee

FY 2010 Budget

Here is some info from OCNA regarding President Obama's FY 2010 budget and increases for the NIH and CDC.

• The National Institutes of Health (NIH) would receive $30.759 billion, which is a $442 million (1.4 percent) increase over FY 2009. Of this amount, cancer research at the NIH through its National Cancer Institute (NCI) program would receive an increase of $268 million over FY 2009, representing a 5 percent boost and bringing cancer research funding at NIH to $5.15 billion. In FY 2008, NCI devoted $22 million to ovarian cancer research.

• The Centers for Disease Control (CDC) Division of Cancer Control and Prevention would receive $341.1 million, which is an increase of $800,000 (0.2 percent) over FY 2009. Of this amount, Johanna's Law: The Gynecologic Cancer Education and Awareness Act would receive $6.807 million and the Ovarian Cancer Control Initiative ovarian cancer research would receive $5.414 million. This is a moderate increase for both programs

The Ovarian Cancer National Alliance is the leading advocacy organization for ovarian cancer patients and their families in the United States and works to increase federal funding for ovarian cancer research, improve health care practice and raise public awareness about the symptoms of this disease.

Livestrong
Dee
Every Day is a Blessing !

OCNA - 12th Annual Conference Info

Information I received in an OCNA e-mail:

Join Us in a Celebration of Life!

The Ovarian Cancer National Alliance's annual conference is about you, and the part you play in helping to find a cure. It's about empowering you to use your story, your voice, and your commitment -- together with other stories and other voices -- until the sounds we make are heard loud and clear by everyone who can help us make a difference.

This is the time. This is the place. This is the Conference where you can help make a difference by playing a part in our united efforts to save women's lives.

We hope you will join forces with us in the Nation's Capital.

Please see below for a list of frequently asked questions including information about registration, scholarships, travel, roommate options, new program highlights and more!

To register and learn more about the Conference, visit www.ovariancancer.org/conference

Is there a registration fee for the Conference? There is a cost to attend the Conference and we encourage you to register early to receive the discounted rate. Early Registration (on or before May 31): $150 Regular Registration: $200 Onsite Registration (after July 3): $250 Lobby Day on Capitol Hill has a separate fee. Online registration (on or before June 5): $100

CMS Approves PET scans for OC Patients

Great news for OC patients !
OCNA issued an e-mail regarding the Centers for Medicare and Medicaid Services coverage of PET scans:

"CMS has reviewed evidence on the use of FDG PET imaging to determine subsequent treatment strategy in patients with ovarian cancer. CMS has determined that the available evidence is adequate to determine that FDG PET imaging improves physician decision making in the determination of subsequent treatment strategy in Medicare beneficiaries who have ovarian cancer, improves health outcomes and is thus reasonable and necessary under§1862(a)(1)(A) of the Act. Therefore, CMS has determined that FDG PET imaging is nationally covered for this indication for this tumor type."

In OCNA's e-mail they noted that PET scans were considered so effective by doctors that almost as many OC patients were scanned through the National Oncological PET Registry as were prostate cancer patients . There are 11 times more prostate cancer diagnoses per year than ovarian cancer diagnosis.

Back in 2005 I went back and forth with my insurance company for 8 months before they finally covered my PET. It is great to know that I won't have to worry about coverage in the future.

Thank you Cara Tenenbaum (OCNA) for advocating for the PET coverage.

Livestrong

Dee

Every Day is a Blessing.

Save the Date- July 6-9 12th Annual Ovarian Cancer National Alliance “Celebration of Life” Conference

Here is info from an OCNA e-mail:

12th Annual Ovarian Cancer National Alliance “Celebration of Life” Conference
July 6 – 8, 2009 ■ Omni Shoreham Hotel ■ Washington, DC
July 9, 2009 Lobby Day on Capitol Hill

The Ovarian Cancer National Alliance’s annual conference is about you, and the part you play in helping to find a cure. It’s about empowering you to use your story, your voice, and your commitment – together with other stories and other voices – until the sounds we make are heard loud and clear by everyone who can help make a difference.

This year, our conference will be offering a new and exciting agenda including:

• Lectures from notable clinicians and researchers in the areas of clinical trials and new or emerging technology and treatments

• Workshops, social and support events for survivors and their family members about living with ovarian cancer

• Advocacy workshops to help train survivors, family and friends about how to participate in Lobby Day on Capitol Hill

With a new Administration and Congress dedicated to Healthcare Reform, this is the year to be in Washington, DC. This is the time. This is the place. This is the Conference that you can help make a difference. We hope you will join forces with us in the nation’s capitol.

Conference registration now open! To learn more please visit www.ovariancancer.org/conference

21st Century Cancer ALERT (Access to Life-Saving Early detection, Research and Treatment) Act

From the OCNA e-mail I received:
"Senators Edward Kennedy (D-MA) and Kay Bailey Hutchison (R-TX) introduced the bipartisan 21st Century Cancer Access to Life-Saving Early Detection, Research, and Treatment (ALERT) Act today, which aims to expand and accelerate research to help find effective treatments and better preventive measures for cancer patients. The 21st Century Cancer ALERT Act is a wide-ranging cancer bill addressing issues from research to workforce shortages to coordination of care.

The 82-page bill offers solutions to many issues that are vital to the ovarian cancer community including the importance of early detection tests, development of biomarker tests, access to cancer care for underserved populations and expansion of access to clinical trials.

The 21st Century Cancer ALERT Act calls for the Department of Health and Human Services to promote funding opportunities and establish a separate review panel for grants related to high mortality cancers. The bill also addresses the need for government agencies to coordinate efforts to fight these cancers. Specifically, the bill requires reporting on cancers whose five year survival rate is less than 50 percent and cancers whose incidence is less than 40,000 people per year."

Click here for the complete press release.

The Bill's number is S-717 and has been referred to the Committee on Health, Education, Labor, and Pensions. If your Senator sits on this committee contact him/her about the importance of this bill. I hope they move this bill out of committee quickly to a full Senate vote. I will post a link to the complete text of the bill when it becomes available online.

Since OC does not have a screening test or reliable biomarker passage of this bill is crucial in helping us find a cure!

Livestrong

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

Survivors Teaching Students & Fundraiser for Brick, NJ family

Survivors Teaching Students:
My friend and OC survivor Dianne participates in the Survivor Teaching Student program sponsored by OCNA. She was featured in an article in the Star-Telegram , Dallas/Fort Worth. I first met Dianne at the LiveStrong Summit in Austin in 2006 she is a wonderful OC advocate and will be attending the OCNA Conference in DC in July. Thanks Dianne for all you do to raise awareness.

Pitts Family of Brick NJ Fundraiser:
Here is the info on a fundraiser on Feb 21st for the Pitt family. Thanks Brian for passing this on.
THE CAUSE: The Pitts family of Brick, NJ has been devastated by cancer in the last year. Last October the Pitts family lost Walter Joe Pitts from liver cancer and recently his wife, Eileen, has been diagnosed with Stage IV lung cancer. This fundraiser is held to help raise money for Eileen's medical expenses while going through chemotherapy.

TIME/DATE: 4:00PM - 7:00PM February 21, 2009

LOCATION: "Hemingway's Cafe" 612 Boulevard Seaside Hts, NJ

DONATION: A $25 donation in advance will include a buffet dinner of either pasta, chicken or sirloin. There will be a 50/50 raffle, a chance auction, DJ and dancing. There will be a cash bar.

CONTACT: To purchase tickets in advance please call (732)581-6265, (609)223-2306 or (908)330-6349. If you cannot purchase in advance there will be a $30 donation at the door.

Livestrong!

Dee
Every Day is a Blessing!

OCNA Award Winners

On June 25th, OCNA announced this year's award winners.

Cindy Melancon Spirit of Survivorship Award
Carolyn Benivegna
Carolyn is an ovarian cancer surviver who founded the Ovarian Cancer Alliance of Florida- Gulf Coast. She currently lives in Michigan and has advocated for the State's declaration of September as Ovarian Cancer Awareness month. She and her husband endowed an Ovarian Cancer Research Fund at the University of Michigan. She posts on the ACOR list and has provided invaluable information to other survivors.

The Voice for Ovarian Cancer Research Award
Karen Mason.
Karen hails from the great Garden State ( And my home turf). Karen is also very active on the ACOR list. She has been working as a patient advocate for the Fox Chase Cancer Center ovarian SPORE and their Institutional Review Board. Recently she was a member of the Dept of Defenses Integration Panel reviewing proposals for funding by the Department of Defense’s Ovarian Cancer Research Program. Great Job Karen!


Rosalind Franklin Excellence in Ovarian Cancer Research Award
Dr. Robert Bast,
Dr. Bast is the VP of translational research at MD Anderson in Houston. He developed the OC125 monoclonal antibody that led to the CA125 test. He is working on looking at other tumor markers that can be used in conjunction with the CA-125 test to better detect the disease.

Congratulations to all the award winners and thanks for all the work you do for OC awareness and research.

LiveSTRONG
Dee

OCNA Conference and Ovarian Cancer Capitol Hill Day

The Ovarian Cancer National Alliance is holding its 11th Annual conference in Washington DC on July 8-10, 2008 at the Omni Shoreham Hotel . It should be a very interesting time to meet other survivors , listen to reports on the latest research and celebrate those who have made a difference in the lives of other.


July 10th is Ovarian Cancer Capital Hill Day. Training takes place the night before. Capital Hill visits are scheduled from 9 -3 that day. It is so important that Senators and Congressmen are given the opportunity to put a face - our face - on this disease.

LiveStrong
Dee