Category Archives: 'Blog'

A Farewell to Our Dear Friend, Maggie Luck

November 3, 2016

Maggie Luck, and her loving family, have touched our hearts deeply for several years and it is with great sorrow to announce that she passed away on October 27, 2016.

One of Maggie’s two daughters, Kelly Luck, recently posted the following announcement:

“My mom’s life has always been filled with love, compassion and a sense of wonder. And now it is time to send her off on her next big adventure. Her love and strength will live on through her family and the many people she has touched. She passed away at home surrounded by her family in the beautiful Colorado Mountains that she loved so much.”

HERA will remain forever touched by Maggie’s kindness, generosity, her love for the mountains, and her ability to live out her life to the fullest. We are humbled and grateful to have been introduced to the wonderful Luck family and to have spent time with them in Eldorado Canyon — a place that inspired her beautiful paintings – which were auctioned and quickly snapped up at Climb4Life in June. We are grateful to award the 2016 Outside the Box Research Grant in Maggie’s honor to Johns Hopkins University. Maggie remains in our hearts.

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Maggie Luck, surrounded by family and friends, at their home in October 2015

 

Join us for Maggie Luck’s memorial on Saturday, November 12th, at St. John’s Episcopal Church in Boulder, CO

http://www.legacy.com/obituaries/dailycamera/obituary.aspx?n=maggie-omalley-luck&pid=182195605

Read Maggie Luck’s inspiring story here:

http://www.denverpost.com/2016/06/14/cancer-journey-is-just-another-adventure-in-a-love-story-for-maggie-luck-who-is-beloved-in-the-boulder-running-and-climbing-communities-and-her-devoted-husband/

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HERA has raised $1 Million for ovarian cancer research

September 15, 2016

Congratulations and thank you! HERA has raised $1 Million for ovarian cancer research since 2002.

HERA One Million Dollars Raised

Thank you for helping us give one million dollars to fund research grants focused on new treatments, better diagnostics and finding a cure for ovarian cancer. According to the American Cancer Society, ovarian cancer occurs in 1 in 75 American women. If ovarian cancer is found and treated before the cancer has spread outside the ovary, the 5-year relative survival rate is 92%. However, only 15% of all ovarian cancers are found at this early stage.

The majority of funds raised have gone to Johns Hopkins University researchers as part of HERA’s unique grants program, which pushes out-of-the-box ovarian cancer research forward.

Of the scientific researchers HERA has funded since 2002, 86 percent of them have remained in the field of ovarian cancer. This is so important because researchers who stay in the field, move up the learning curve – which facilitates advances in research.
— Nickie Kelly, HERA Executive Director

Additionally, HERA helps Principal Investigators (PIs) get on the right track to larger grants by providing important bridge funding for post doctorate students/researchers. The average age of principal investigators that win large grants is 42, while post docs are often younger (26 – 30). HERA grants advance research by rewarding attainable grants and by providing valuable experience in the grant process.

The mission of the HERA Women’s Cancer Foundation is to eliminate ovarian cancer by promoting Health, Empowerment, Research, and Awareness

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Review: A Guide to Survivorship for Women Who Have Ovarian Cancer

September 12, 2016

A Johns Hopkins Health Book, 2nd Edition, Edited by Dr. Robert E. Bristow, Dr. Terri L. Cornelison, Dr. F.J. Montz, 2015

Review by Whitney Boland

September is ovarian cancer awareness month, a great time to learn more about the disease. Although ovarian cancer lags behind breast cancer in terms of research and funding, there is still a mountain of research to weed through, and it can be overwhelming and difficult to find.

Historically, the only option for women newly diagnosed with ovarian cancer was to turn to doctors and ask them questions directly. But in order to do that, you also have to know what to ask. So the real question then becomes, “Where do I begin?”

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An easy first step might be to read the book, A Guide to Survivorship for Women Who Have Ovarian Cancer. Originally published in 2005 by Johns Hopkins University with portions written by doctors who are longtime HERA supporters, the second significantly updated edition of the book was released in 2015. While its authors tout the book as a “guide”, it is truly a companion. Stacked with information and incredibly readable, it tackles the daunting task of compiling key information and presenting it in a way that allows women to explore the expectations and also the mysteries of ovarian cancer.

The book starts with the basics — what is ovarian cancer, what are the different types, what does “staging” mean (i.e. stage I, stage II), what is debulking surgery — and moves seamlessly forward as if you were listening to a doctor, a mentor and a friend. It moves through what to expect of the diagnosis process, treatment and post treatment. Did you know that one-third of women who later get diagnosed with ovarian cancer had symptoms for more than six months before diagnosis? Or that the chances a woman will have an optimal debulking surgery is three times higher if the surgeon is a gynecological oncologist (these guys are all highly trained surgeons) rather than a general surgeon?

Between the meaty chapters are short perspective pieces from ovarian cancer survivors chronicling their life experiences. These personal accounts help set up the information presented in the subsequent chapter while also adding a real-life element to the litany of information by providing insight into some of the hardest questions to really answer — what will it be like?

Whether you’re wondering what you should expect from chemotherapy, or what alternative therapies might help enhance post-diagnosis quality of living, or even what chemo-brain is, these and many more questions are answered in this book.

“This book is written so that those diagnosed with ovarian cancer will have someplace to turn for empowering information,” says Jill Slansky, a Professor of Immunology and Microbiology at the University of Colorado School of Medicine as well as a member of the HERA Board of Directors. “It provides an accessible way to get information without having to call the doctors directly the way Sean [Patrick] used to do. The book has critically important information for diagnosed women and their well care-takers.”

What to check out more? Get the book directly from Johns Hopkins Library.

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HERA says good bye to Sheila Phelan Wright, November 18, 2015

December 2, 2015

Sheila Wright Photo

The HERA Women’s Cancer Foundation is deeply saddened by the passing of Sheila Phelan Wright on November 18, 2015.

In addition to being Professor Emerita at DU, Sheila was a long-time friend and advocate for HERA. She was smart, always asked great questions and was an important critical thinker for HERA. The organization was very fortunate to have received her warmth and skills as she served in many capacities for us including serving on the Board from 2013 to 2014 and receiving the Power of One Award from the HERA Foundation in 2015. It is with heavy hearts that we attended her Memorial on December 2, 2015 at the University of Denver to say good bye to Sheila, one of our most admirable friends.

Obituary Published in The Hartford Courant on Nov. 22, 2015

 

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The HERA Foundation Honors Outgoing President Samantha Lockwood

August 29, 2015

The HERA Foundation sends a big shout out to Samantha Lockwood.

Samantha is a living loving example of why we exist and why we stay focused on our mission to eliminate ovarian cancer through Health, Empowerment, Research, and Awareness. Samantha gave the world a wake up call when she was diagnosed at the young age of 30. Samantha turned our heads and broke our hearts here at HERA.

SamanthaLockwood3

She became a reason for our existence and a reminder that we must fight to end this cancer. Samantha has dedicated the eleven years since her diagnosis to HERA. She is driven to educate women on how to spot the symptoms early to ensure their lives will not be taken. She has rallied her friends and family to help her raise over a $143k to fund cutting edge research for better treatments, diagnostics and prevention . She has educated countless women, and the men who love them, about the symptoms of ovarian cancer and has heard from many women who were diagnosed early after hearing Samantha talk about her experience. She inspires every woman in her wake to embrace the challenge and move forward with grace.

After, serving as an Ambassador for HERA since 2006, Samantha joined the Board of Directors in 2009 and quickly percolated to a leadership role on the Executive Committee. Ultimately Samantha was elected to serve as the President of the Board in 2013.

Samantha has never been shy about sharing the impact ovarian cancer has had on her life. As Samantha closes her term as President, she gets raw and real for our HERA family in this interview.

Samantha you were diagnosed at a young age. What changes did you first notice with your body when you became suspect that something was wrong?
Actually I didn’t notice anything that I didn’t chalk up to stress. I was 30 years old. I had a new job, was ending a relationship and had recently moved. Life was hectic. I had stomach aches but that seemed normal given my circumstances. My first inkling that anything was actually wrong was when I went for my annual gyn-exam and the doctor felt a mass that seemed too big to be a normal cyclical cyst. He suggested surgery but left the timing up to me. It was winter so I wanted to get it over with in time to climb in the Spring. At the time I remember asking if cancer was a possibility and he said “absolutely not, you are too young for cancer.” Fortunately, even though I didn’t suspect cancer, a friend of mine urged me to see a gyn-oncologist with the understanding that I wanted to hold on to my ovaries. Gyn-oncologists have more experience with surgery than regular OBGYNs so we figured I should go to the doctor that had more surgical experience. I am lucky because I live in Philadelphia where it was easy to find a gyn-oncologist. Later I found out that having a gyn-onc perform the initial surgery increases survival rates by 25%. Note that the survival advantage depends on the stage of ovarian cancer being operated on.

SmanthaLockwood4

When you heard those devastating words, that you have cancer what was your initial response and how did you process it?
Well, when I first came out of what was supposed to be routine surgery, my parents were there and they gave me the news that the doctors had removed my ovary and “some other stuff that looked funny” but they wouldn’t tell me why. I was very loopy from the surgery so they were cautious that I wouldn’t react well, plus, as you can imagine they were devastated and not really processing it themselves. Of course I was livid and heavily medicated. I remember yelling at anyone who came in or called because the doctors “stole my ovary”. Fortunately this outburst brought my family some comic relief. The next day the doctor came in before visiting hours. He realized I was still not informed so he gently touched my foot as he explained cancer was why he removed my ovary, fallopian tube and pelvic tissue along with some lymph nodes. It was surreal. I don’t remember much after that.

You’ve participated in nearly 20 events for HERA, always using the team name Bury the Dragon. What is the meaning behind that name?
When I was first diagnosed I had just started dating a guy, we were starting to fall in love but it was all a new relationship. Six months in I was recovering from a major surgery and I was bald. I’ve always had a low maintenance style so wigs never appealed to me, too much fussing was required and they were too itchy. I usually wore scarfs on my head but it was summer and it was hot and humid in Philadelphia. Plus, whenever I wore a scarf people on the street would look at me with sympathy. I hated that. If I was out it was because I felt strong and good, I didn’t want to be reminded of my disease every time someone gave me a sympathetic look.
I remember one day walking to a restaurant with Mark, I was sweating and miserable. I asked him if he would be embarrassed if I took off my scarf. Of course he wouldn’t but when I did, I felt like I was naked. I was so embarrassed. The next day, my blood counts came in strong so I went to the tattoo shop and had a dragon tattooed on my head. I was able to go bald during the hot summer and no one looked at me like I was pathetic. No one realized I had cancer! People thought I was a tough girl which was totally new to me. By the way, Mark and I ended up getting married five years later while I was going through my second bout of ovarian cancer. I was completely bald for the ceremony.

SamanthaLockwood2

You have been an amazing role model to women who receive a similar diagnosis to you.  What do you tell women when they reach out to you for advice?

  • Spend your days doing what you love, when illness won’t let you do what you love, find something else to love and do that. I love climbing but there were many days that I couldn’t climb, so I spent a lot of time knitting.
    Don’t be afraid to ask for help. This one can be very difficult. But learning to ask for help is a gift to yourself and to the people who love you.
  • Get some thick skin… well intended people often say some pretty insensitive stuff. One time someone who I didn’t know at all, asked me how long I had to live!
  • When you are waiting for a test result try not to spend the time before you get the result paralyzed with fear, it won’t change the result. Enjoy not having bad news and deal with the bad news when and if it comes.
  • Never ever let anyone tell you that you have to be positive all of the time. It is ok to grieve, be angry and be scared. This disease sucks and it brings out every emotion. So many times we feel pressure to be positive constantly. For me, oppressing emotions is really not healthy.

What advice do you have for women in general when it comes to the overall management of their health?
In addition to having cancer twice I also broke my ankle very badly last year. The lessons I learned from cancer absolutely applied to those two surgeries and five days in the hospital getting my ankle fixed.

  • Find the best doctor around. Go see the expert. Interview them for the job. Hire them for their skills not their bedside manner. If you don’t like them, fire them. You are the CEO of your healthcare. Educate yourself about treatment options and clinical trials. Advocate for yourself and if you aren’t feeling up to it, bring a friend or family member along to advocate for you. Do not be afraid to question your doctors. They are not always right, they sometimes make mistakes. Write your questions down before your appointment.
  • Get a second opinion.

 

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Ovarian Cancer and Social Security Disability

April 30, 2015

Written by guest blogger Deanna Power

An ovarian cancer diagnosis is hard to accept, and is hard physically, emotionally, and financially to deal with. Ovarian cancer affects women of all ages, and is often diagnosed at a late stage. Because of this, many women with ovarian cancer need aggressive forms of treatment and are unable to continue working. The costs for the different types of treatment required for ovarian cancer can add up quickly, including a hysterectomy, chemotherapy, and other drug and hospital charges. Without insurance, these costs can quickly rise to over $200,000. Although many insurance plans cover ovarian cancer treatments, they do not cover all drugs or treatments available. Due to the hardships thousands of women face every year, the Social Security Administration (SSA) offers disability benefits for hundreds of conditions, including ovarian cancer.

How to Medically Qualify with Ovarian Cancer

The SSA evaluates all applicants with a medical guide called the Blue Book, which has listings for various conditions, symptoms, and disability benefit qualifications. An ovarian cancer diagnosis is listed under  section 13.23E  of the Blue Book. This includes all tumors except germ-cell tumors, with tumor extension beyond the pelvis (i.e. peritoneal, omental, or bowel surfaces), metastases to or beyond the regional lymph nodes, and/or recurrent following initial antineoplastic therapy or germ-cell tumors that are progressive or recurrent following initial antineoplastic therapy.

More severe forms of ovarian cancer that also have distant metastases or are inoperable (a physician’s opinion that surgery will not be beneficial) or unresectable (the cancer is still present after surgery). If your ovarian cancer has progressed this far, it is listed on the SSA’s Compassionate Allowances List (CAL). The CAL is a list of conditions that are eligible for almost immediate approval, because the symptoms are so serious that patients can’t wait the one to two years of a normal SSD approval. Applicants with inoperable ovarian cancer or distant metastases can expect to be approved in as little as 10 days.

Types of Social Security Disability Benefits Available

The SSA offers two types of disability benefits for women with ovarian cancer. The first form of benefits, Social Security Disability Insurance (SSDI), is based on how long you’ve worked, how much you’ve paid into Social Security in taxes, and your previous income. Those over the age of 31 generally need to have worked and paid Social Security taxes for any five of the last ten years before applying. CAL approvals often happen in just a few weeks, but a typical SSDI application can take up to two years for an approval. Whether or not your ovarian cancer is approved under CAL, you need to wait five months after the onset date for monthly payments to start. If decisions on claims take longer than five months, you would be paid through a lump-sum check for those missed months upon approval. After being approved for SSDI, you will automatically be approved for Medicare two years after you start receiving benefits.

The second type of disability benefits, Supplemental Security Income (SSI), is an income supplement funded by general federal tax revenue instead of Social Security taxes. SSI has strict financial limits, but no required work history. Because of this, it is the best option for adults with low resources or who haven’t worked throughout their lives. SSI benefits can start being paid to a woman with ovarian cancer the first month after applying, so long as she financially qualifies. A single applicant’s countable income must be less than $733 per month, with less than $2,000 in assets (stocks, bonds, life insurance, etc.). A couple can’t make more than $1,100 of countable income per month and must have less than $3,000 in assets. The SSA will not include one house, one car, or other personal items such as wedding ring when evaluating an applicant’s assets. SSI recipients in most states are eligible to receive Medicaid.

Applying for Social Security Disability

To apply for disability benefits with ovarian cancer, you will need a birth certificate, tax information, thorough medical information and other documents. It is important to include as much thorough medical evidence as possible for ovarian cancer applications, including medical records, lab results, and written statements from your physicians. The amount of time that it takes for the SSA to come a decision on your claim depends primarily on how quickly they can get medical evidence from your doctor and whether another medical exam is necessary for approval.

For a complete checklist on what you’ll need to apply for disability benefits, review the Adult Disability Starter Kit  on the SSA’s website. SSDI applications can be completed online, but SSI applications must be completed in person, so be sure to make an appointment with your local SSA office.

If you have already applied for disability benefits for ovarian cancer and your application was denied, you can appeal the decision. If you were denied for medical reasons, you can fill out  the Appeal Request and Appeal Disability Report or contact your local Social Security office in person or 1-800-772-1213 or 1-800-325-0778 for TTY.

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Deanna Power is the Community Outreach Manager at Social Security Disability Help. She assists people with disabilities with the application process for Social Security benefits, from initially submitting paperwork to keeping benefits after approval. She has been featured on numerous disability resources such TASH.org and NDSS.org. She lives in Boston, MA with her hamster.

Categories: Blog, HERA News, Ovarian Cancer News

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Breaking News – Ovarian Cancer Research Dream Team Selected

April 21, 2015

Board President (far left) Samantha Lockwood and Collaborating Partners

Board President (far left) Samantha Lockwood and Collaborating Partners

Stand Up to Cancer Ovarian Cancer Dream Team Announced

The American Association for Cancer Research (AACR), Scientific Partner to SU2C, announced today the formation of a Dream Team devoted to ovarian cancer research at the AACR Annual Meeting 2015, held in Philadelphia.

HERA Women’s Cancer Foundation is contributing $200,000 to this effort because of your support. Thank you. This is an opportunity that will have great impact for the ovarian cancer community as a whole, and we are thrilled to be one of the organizations collaborating in this effort. For the thousands of women and families affected by ovarian cancer who are looking to the world of science for answers, innovative research is the best hope for achieving better outcomes.

Our focus at HERA Women’s Cancer Foundation is eliminating ovarian cancer by funding scientific research grants. The Stand Up to Cancer Ovarian Cancer collaborative effort allows HERA to better leverage every dollar raised for this partnership. Our participation in this effort would not be possible without you. Thank you for your unwavering support in what we do. Your support means the world to every life that has been affected by this insidious disease.

I hope you will share this news with family and friends who have supported us and take pride in our accomplishments together.   Read on…

Collaborating organizations, including HERA, will collectively devote $6 million over three years to a project entitled “DNA Repair Therapies for Ovarian Cancer.” The U.S. Food and Drug Administration (FDA) last year approved the drug olaparib to treat women with advanced ovarian cancer associated with defective BRCA genes, which are among a number of DNA repair genes identified as mutated in ovarian cancer. The existence of defects in DNA repair has emerged as a common weakness in ovarian cancer. By targeting DNA repair pathways, the Dream Team hopes to build and expand on the recent clinical advances seen with olaparib and other PARP inhibitors in current clinical trials.

The team will also focus on prevention and early detection of ovarian cancer, which tends to be diagnosed at a late stage of the disease.

Alan D’Andrea, MD, co-director of the Gene Therapy Center at Dana-Farber Cancer Institute in Boston, and the Fuller-American Cancer Society professor of medicine at Harvard Medical School, will lead the Dream Team. Elizabeth M. Swisher, MD, professor in the Department of Obstetrics and Gynecology at the University of Washington in Seattle, will be co-leader.

In addition to the team leaders, the project will involve researchers at Mayo Clinic in Rochester, Minnesota; University of Chicago; The University of Texas MD Anderson Cancer Center in Houston; and Memorial Sloan Kettering Cancer Center in New York.

Thank you for your unwavering support!

Full Press Release

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Risk Factors and Ovarian Cancer

February 19, 2015

Risk Factors and Ovarian Cancer

Written by Board Member and Medical Advisor Sarah Adams, MD

Ovarian cancer is characterized by presentation at late stages, usually when women have tumors throughout the abdomen and pelvis. This is due in part to the lack of effective screening strategies, but may also be due to the early spread of cancer cells in the abdominal cavity and to rapid tumor growth. It has long been hoped that a better understanding of the causes of ovarian cancer and factors that promote tumor development would lead to earlier detection and better outcomes for women with this disease.

The best understood risk factor for ovarian cancer development is a family history of breast or ovarian cancer, and specifically the presence of mutations in the BRCA1 or BRCA2 genes. Women who inherit a dysfunctional copy of BRCA1 or BRCA2 are more likely to develop ovarian cancer– with a lifetime risk as high as 40%. Fortunately women who are found to have a BRCA gene mutation can significantly reduce their risk either by having their ovaries removed if they have completed child-bearing, or by taking birth control pills. Currently genetic testing is recommended for all women diagnosed with ovarian cancer, and genetic counseling to assess cancer risk is recommended for women with a family member who has had breast or ovarian cancer. Importantly, additional genes that are often dysfunctional in ovarian cancers have recently been identified. As the impact of these mutations on cancer risk is evaluated, additional women with inherited susceptibility can be identified and offered risk-reduction options.

talcum powder

Other factors that have been associated with ovarian cancer development are less well understood. An early theory suggesting a link with the use of talc powder has recently been disproven in a large study of over 60,000 women (Houghton SC et al, J Natl Cancer Inst 2014). A more established factor that modulates risk of ovarian cancer is a woman’s reproductive history. Women who have never had children, or who have early onset of menstrual periods or late menopause have been shown to have a higher rate of ovarian cancer development. This increased risk of cancer is associated with increases in the number of ovulatory cycles a woman has in her lifetime – each ovulation event induces local inflammation and requires tissue repair, which could result in cells acquiring cancer-causing mutations. Conversely, pregnancy, breastfeeding, and the use of oral contraceptive pills, which interrupt ovulation cycles, all reduce the risk of ovarian cancer.

Interestingly, recent studies suggest that a significant proportion of ovarian cancers actually originate in the fallopian tubes, with early cancers seeding the ovaries before spreading beyond the pelvis. This data derives from careful examination of the ovaries and fallopian tubes removed from women with BRCA gene mutations for cancer risk reduction. This shift in the understanding of the origin of ovarian cancer has led to a new interest in the impact of ovulation on local conditions that could affect both the ovarian surface cells and the nearby fallopian tube. As a result, physicians have begun to evaluate whether removing just the fallopian tubes, and not the ovaries, in young women would provide protection from cancer development without rendering women prematurely menopausal. Ongoing studies are expected to clarify the risks and benefits of this approach, which will allow women and clinicians to make decisions that will best prevent ovarian cancer development.

Women should talk with their health care providers to determine whether genetic counseling or risk reduction procedures are indicated for them. Additional information about ovarian cancer risk and genetic testing is available at the following sites:

http://www.cancer.net/cancer-types/hereditary-breast-and-ovarian-cancer

http://www.facingourrisk.org/understanding-brca-and-hboc/index.php

National Cancer Institute: Cancer Genetics Services Directory www.cancer.gov/cancertopics/genetics/directory

Dr. Sarah Adams is the Victor and Ruby Hansen Surface Professor in Ovarian Cancer Research and the Assistant Professor, Gynecologic Oncology at the University of New Mexico Cancer Center

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Flying Pigs and HERA Climb4Life

January 29, 2015

If you’ve ever come to a Climb4Life, or just been part of HERA Women’s Cancer Foundation for a while, you’ve probably heard the name “Stanley.” He’s coveted, he’s contested, and he’s cherished.

You’ve heard the lore before, but, just who is Stanley anyway?

Stanley_in_his_new_homeThe Stanley Award was created by HERA founder, Sean Patrick. When she started Climb4Life in 2002, she was told that people would donate to a rock climbing event when pigs flew. Thirteen years later, the Climb4Life events are still going strong by raising lots of funds to eliminate ovarian cancer through scientific research while also raising awareness about the signs and symptoms of ovarian cancer.

And, Stanley, the flying pig award? He’s still going strong, too. The top fundraising team at the Climb4Life weekends get to take Stanley home, and the competition is fierce!

With our 2015 Climb4Life Series gearing up for an all-time awesome year and Climb4Life Boston just around the corner…it is time for you to start thinking about pulling together your team to strategize on how to raise the most funds and bring Stanley home.

Who’s going to be the top fundraising team at the 2015 Climb4Life Boston? So far over $5,000 has been raised by the Boston Climb4Life participants, but teams who win Stanley know that it takes over three times that amount to bring him home and keep him.

In the past people have done crazy things to raise funds, even shaving their heads! In addition to Stanley, the top fundraising team will win some fantastic prizes.

It’s not too late to register. Climb4Life Boston is right around the corner, March 7, and teams are still forming.

New to climbing? No problem – we offer clinics. Experienced? Watch for exciting pro athletes to join the mix and challenge you to new heights. Prefer yoga and fitness classes? We’ve got you covered.

Click here to register now and get in on the fun.

Or, donate to your favorite participant and help their team give Stanley a new home.

Stanley Award

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Real Men Wear Teal

October 3, 2014

Our good friends at Sportrock Climbing Center in Alexandria, VA helped raise awareness about ovarian cancer at their “Feel the Teal” event on October 2.  Folks lined up for manicures and pedicures, bought some cool swag, and made donations to HERA.  What a fun event!  Even the guys got involved because ovarian cancer affects them, too.  Check it out:

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