The Colorado Ovarian Cancer Alliance, the Cheryl Shackelford Foundation, the Sue DiNapoli Ovarian Cancer Foundation and the HERA Women’s Cancer Foundation have formed a new consortium – The Ovarian Cancer Task Force (OCTF).  Their goal is to save women’s lives by supporting the efforts of partner groups to raise awareness of ovarian cancer through education including the promotion of early detection, as well as research, outreach, support services and other means.

The new task force is part of the Colorado Cancer Coalition (CCC) and will be led by Guadalupe (Pep) Torres, Colorado Ovarian Cancer Alliance (COCA) Executive Director.

Every 40 hours one woman in Colorado dies from ovarian cancer. Ovarian cancer is the fifth most common cancer in females in the United States but it is the deadliest gynecologic cancer.  The American Cancer Society estimates that 22,280 women in the United States will receive a new diagnosis of ovarian cancer in 2012 and that 15,500 women will die from the disease.

In their organization’s mission statement, each of the OCTF members stresses the importance of raising awareness.  They know that deaths can be prevented by greater recognition of ovarian cancer symptoms and earlier diagnosis.   If the disease is found in an early stage, up to 90 percent of the women diagnosed with ovarian cancer will survive for more than five years.  Unfortunately, over 80 percent of diagnosed cases are in stage III/IV, when the disease has already spread beyond the ovaries. 

There is no universally-accepted screening test for ovarian cancer – and the Pap test does not check for ovarian cancer – so being able to recognize the symptoms is critical to saving lives.  Symptoms of ovarian cancer include suddenly occurring and persistent bloating, pelvic or abdominal pain, difficulty eating or feeling full quickly, and urinary urgency or frequency.  However, the symptoms of ovarian cancer are often vague and may not be specific or severe, so often women do not seek medical attention and health professionals fail to diagnose it early.

The Task Force is already discussing plans for an Ovarian Cancer Summit in September 2012.

The Ovarian Cancer Task Force Member Organizations:

The Colorado Ovarian Cancer Alliance

The mission of COCA is to promote awareness about ovarian cancer through advocacy, education and support.  COCA’s goals are to advocate for women with ovarian cancer, and for ovarian cancer awareness, through participation in activities at the local, state and national levels; to educate women, families, doctors and health care providers about early detection of ovarian cancer through Survivors Teaching Students™ and COCA Speakers Bureau; and to support survivors through offering ongoing Nicki’s Circle Ovarian Cancer Support Groups.   To learn more about COCA and its work, click here.

The Cheryl Shackelford Foundation

Cofounded by and named in honor of a 20-year survivor of ovarian cancer, CSF is committed to raising public awareness and educating women in the state of Colorado regarding the symptoms, risk factors and facts about ovarian cancer. CSF’s goals are to increase the rate of early detection of ovarian cancer and assist those women diagnosed with the disease in a supportive role.  To learn more about CSF and its work, click here.

Sue DiNapoli Ovarian Cancer Foundation

Sue DiNapoli, a resident of El Paso County, enjoyed a life filled with family, friends, volunteer work and fun. With a contagious laugh and a remarkable spirit, her upbeat attitude and determination helped her battle ovarian cancer for more than 5-1/2 years. Proceeds of the Sue DiNapoli Ovarian Cancer Foundation help low income and under-insured women in the Pikes Peak area with screening and early detection of ovarian cancer. To learn more about the Foundation and its work, click here.

HERA Women’s Cancer Foundation:

The HERA Women’s Cancer Foundation is a 501(c)(3) non-profit organization whose mission is to stop the loss of women from ovarian cancer by promoting Health, Empowerment, Research, and Awareness.  As a nationally recognized ovarian cancer organization, HERA provides funding for cutting-edge research grants to scientists at respected medical institutions.  In so doing, HERA attracts more young researchers to expand the scientific understanding of ovarian cancer while improving the lives of those battling the disease.  In addition, HERA awards grants to local community groups to raise awareness about the disease in novel and unusual ways.  More information is available at www.herafoundation.org.

KUED in Salt Lake City produced the 30-minute film which premiered during Outdoor Retailer market on Thursday, January 19.  Over 80 guests gathered at the Utah Museum of Contemporary Art to share memories of Sean, chat about the Climb4Life events, and enjoy this engaging film about an engaging woman.  In establishing the HERA Women’s Cancer Foundation, Sean gathered a community, became a catalyst for change, and continues, even after her death, to inspire the critical quest for ovarian cancer research and awareness.  The HERA Women’s Cancer Foundation is deeply committed to continuing her work and carrying forth her legacy.

DVDs of the documentary will be available soon.  Our thanks to KUED for creating this inspiring film and to our screening sponsor, Black Diamond.

The HERA Women’s Cancer Foundation offers a series of fun, creative events throughout the year.  Join us at one or more in 2012 to celebrate our 10th. You can also help by being part of our $10 for 10 Campaign.  Donate $10 per month for the entire year and help us carry on Sean’s legacy.  Click here to make your recurring donation now!

DENVER and SALT LAKE CITY, January 11, 2012 — Ten years ago, Sean Patrick became a catalyst for change by establishing the HERA Women’s Cancer Foundation (www.herafoundation.org) in Colorado to rally a community to stop the loss of women from ovarian cancer. To honor Patrick’s vision and inspiration, KUED-TV in Salt Lake City, Utah created a documentary, “Climb for Life:  A Legacy.”  The premiere will air during Outdoor Retailer market on Thursday, January 19, 2012 at 7 p.m. MT at the Utah Museum of Contemporary Art in Salt Lake City.  For a DVD of the 30-minute program, please call Mary Dickson at 801-581-3263 or mdickson@kued.org. 

An athlete diagnosed with ovarian cancer, Patrick touched the lives of countless people as she fought to overcome this deadly disease. KUED’s documentary explores Patrick’s life and legacy through interviews with cutting-edge medical researchers, committed surgeons, world-renowned medical institutions, those diagnosed with the disease and others who were influenced by her passion for life and drive to stop the loss of women from ovarian cancer.

One in 71 women will be diagnosed with ovarian cancer in her lifetime. The fatality rate for those diagnosed is more than 80 percent. A significant factor in the grim statistic is the lack of early detection and easy misdiagnosis of symptoms. With early detection, about 94 percent will survive longer than five years after diagnosis. Currently, only 20 percent of ovarian cancer is caught early. In 2011, about 21,900 new cases will be diagnosed in the United States and about 15,460 deaths will occur.  It ranks fifth as the cause of cancer deaths in women.  (Source: American Cancer Society)

In establishing the HERA Women’s Cancer Foundation, Patrick inspired the critical quest for ovarian cancer research and awareness.  To attend the special preview screening of KUED’s celebration of Patrick’s life and work, call 801-585-3523 or email jvoland@kued.org. For a DVD of the documentary, contact Mary Dickson at 801-581-3263 or mdickson@kued.org. 

About the HERA Foundation:

The HERA Women’s Cancer Foundation is a 501(c) (3) non-profit organization whose mission is to stop the loss of women from ovarian cancer by promoting Health, Empowerment, Research, and Awareness.  As a nationally recognized ovarian cancer organization, HERA provides funding for cutting-edge research grants to scientists at respected medical institutions.  In so doing, HERA attracts more young researchers to expand the scientific understanding of ovarian cancer while improving the lives of those battling the disease.  In addition, HERA awards grants to local community groups to raise awareness about the disease in novel and unusual ways.  More information is available at www.herafoundation.org.

Media Contact:

Staci Busby

303-810-6500

stacibusby@yahoo.com

Great news came out of Washington, DC yesterday.  Congress has passed an omnibus appropriations bill for this fiscal year to fund ovarian cancer research and education!  The funding includes $5 million for Johanna’s Law: The Gynecologic Education and Awareness Act; $4.9 million for the Ovarian Cancer Control Initiative, and $16 million for the Ovarian Cancer Research Program run by the Department of Defense.

The Ovarian Cancer National Alliance (OCNA) fought hard to bring about this legislation.  Thanks to the HERA community for making calls, sending e-mails, and talking to your elected representatives.  You made a huge difference!

Click here to read the OCNA announcement.

Our thanks to KUED for creating the documentary and to our screening sponsor, Black Diamond!

For a sneak peek at the documentary, click here.

November 2011

Download a PDF of the full article.

While there is much to be thankful for these past twelve months, we are also looking towards the future. HERA is proud to be participating in Colorado Gives Day, a special one-day online giving event promoting the philanthropic generosity of our state. On December 6, 2011, donors like you will come together for 24 hours to raise millions of dollars for non-profits like ours. Last year, the goal to raise $1 million for Colorado charities was exceeded—$8.7 million was distributed instead!

Colorado Gives Day is presented by the Community First Foundation and their corporate partner, FirstBank, and we are so pleased to be able to take advantage of this amazing opportunity.  Visit GivingFirst.org/HERA to learn much more about our goals and accomplishments. Thanks to this great opportunity:

• 100% of your donation will come to HERA when you give through GivingFirst.org.

• When you give online any time on December 6, the value of your donation will be increased by the FirstBank Incentive Fund.

• HERA has a chance to win $1,000 Bonus Bucks and $5,000 High Five cash prizes when you remember us on Colorado Gives Day.

Please mark your calendar for this important event when considering your end-of-year giving. Every donation, large or small, makes a difference, so, donate online at GivingFirst.org/HERA any time over the 24 hour period of December 6.

Whether you climbed or hiked or biked or ran for HERA, or simply supported someone you did, we thank you.  Because of people like you, HERA is so much more than a non-profit organization. It is a community of passionate people dedicated to supporting HERA’s mission to stop the loss of women from ovarian cancer by promoting Health, Empowerment, Research, and Awareness.

From everyone at HERA, thanks, and be well!

Our deepest appreciation to everyone who ran or donated to HERA; your support and generosity are amazing! We’ll see you next year for Run Like a Girl 2012!

Run Like a Girl 8k from Jason Faulkner on Vimeo.

"Rexy"

Saturday, October 15, marks the two-year anniversary of losing my Mom, Marilyn Usinowicz, to ovarian cancer.  I want to express my gratitude and thanks to the HERA Women’s Cancer Foundation and the Board.  I can’t change what happened to my Mom, but together we can make a difference…and we ARE.   I am so proud of what we have accomplished!

Last May, I hosted a Mother’s Day fundraiser for HERA.  Following is the speech that I gave at that event:

Thank you all for your support of the HERA Foundation.  The HERA Foundation is an ovarian cancer awareness and research fund dedicated to increasing awareness, proper diagnosis and care, and ultimately finding a cure to this insidious disease.  I implore all of you to visit the HERA table [at the event] and learn about ovarian cancer.  1 in 71 women will be diagnosed with ovarian cancer.  With early diagnosis, 90% will survive.  Currently only 20% of ovarian cancer is caught early.  Sean Patrick, the founder of HERA who lost her life to ovarian cancer in January 2009, said, “We are with ovarian cancer where breast cancer was 20 years ago.  When people started talking about breast cancer, women started surviving.  NOW is the time to start talking about ovarian cancer.”  So please, learn the facts and the symptoms—the life you save could be your mother’s, your sister’s, your wife’s, your daughter’s, or your own. 

It’s been a year and a half since “Rexy,” as we endearingly called her, died, and not a day goes by that I don’t think about her.  Sometimes it is with great sadness and sometimes it is with great joy, but it is always with gratitude.  Gratitude for being the person that she was.  Gratitude for teaching me how to live and for making me the person that I am. Gratitude for living her life with an open heart and an open mind.  Gratitude for always looking on the bright side.  Gratitude for one of the best days of my life—when she knew that her time was short and we just laid in her bed while she held my hand and recounted our lives together, from the time that I was a baby, to my childhood, to my teen years (and I definitely tested her patience and love during those years!), to when I became an adult and was not just my Mother’s daughter, but also her friend. Gratitude for all things “Rexy.”

My Mom was amazing.  She lived her life well, she loved her life, and she loved her family and friends.  She went out of her way to make her friends and family feel loved and special.  Every phone conversation with my Mom ended with an, “I love you,” and I knew she meant it every single time.  

She faced the trials and tribulations of life with honesty and integrity, whether they were the trials and tribulations of her friends and family, or those of her own life.  Her battle with cancer reminded us all that there are no guarantees in life.  No matter what life threw her, she continued to get up, dust herself off, and face the next day the best she could, until the cancer finally made it so she just could fight no more.

Lara and Marilyn Usinowicz

There is one thing that I can guarantee I learned from my Mom:  if you live your life like “Rexy”—with determination, strength, integrity, gratitude, and tons and tons of love—I guarantee it will be a good life.

Thank you, Mom, for teaching me so well.

Don’t forget to tell the people you love that you love them.  Tell them today, tomorrow, next week, next month, for no reason.  Tell them just because you do…and you can!

Sean and Maile

So, I was invited to tell the story of how I auctioned off a week’s vacation in my ocean-view cottage in Hermosa Beach, California as an incentive to raise more funds from my friends and family to support HERA’s Climb4Life fundraising event. I also threw in my car and my trusty beach cruiser. Crazy, I know, but I lived only two blocks from the beach and two blocks from my office. There was a couch at work and I could shower at the gym.

It worked.

I managed to raise $8,435 for the event in Boulder that year. We pulled in a total of over $60,000 for the 2009 Climb4Life. HERA Founder, Sean Patrick, had passed away only four months prior, and we were all still processing what that meant – to each of us, to our extended family, and to HERA. What the HERA community had in common was an unwavering commitment to carry forth the torch, the rituals, and the traditions that personified Sean’s spirit and determination to raise awareness and find a cure for ovarian cancer.

My co-worker who donated the largest sum and “won” my prize summed it up:

 “Maile, you make the world a better place in so many ways. Good for you helping raise money for such a worthy cause. As much as I would love to use your house, car, food, liquor, air conditioning, water, electricity, and torment your neighbors, I would prefer you give it to the person of your choice.”

Maile's Hermosa House

That turned out to be one of my best friends from Park City, who donated the second highest amount and promptly took me up on my offer and moved in with her husband for a week. And I hit the couch in my office.

Giving up my house for a week seemed like a trivial inconvenience compared to what Sean and the thousands of other women suffering from ovarian cancer had gone through as they dealt with their disease. Sean, herself, described the experience as “Mr. Toad’s Wild Ride through the Healthcare System.”

I was honored to be able to do my small part to increase awareness around the signs and symptoms of ovarian cancer, raise monies for research, and keep Sean’s flame burning brightly.