The Sandy Rollman Ovarian Cancer Foundation (SROCF) humbly began 15 years ago, on a living room floor, with the goal to give women a fighting chance against ovarian cancer. At the heart of the foundation is Sandy Rollman, a remarkable woman who lost her battle to ovarian cancer in 2000 at far too young an age. Sandy’s oncology nurse, Robin Cohen, and sister, Adriana Way, first came together to fight for her when she couldn’t fight for herself any longer. They created the Sandy Rollman Ovarian Cancer Foundation in her memory while trying to prevent other women from having to endure the same pain as she did. When first trying to connect Sandy with another survivor, Robin discovered how few resources and support services there were available to women with the disease. From inception, the SROCF set up a monthly meeting to make sure that all women with ovarian cancer had a place for support and to connect with other survivors. Robin says that even at their first meeting a woman admitted “I thought I was the only one.” The Sandy Rollman Ovarian Cancer Foundation works tirelessly to ensure that no woman with ovarian cancer ever feels alone.
Today, the Sandy Rollman Ovarian Cancer Foundation works to unite the community together to promote awareness of ovarian cancer through education about the disease, research funding, and advocacy. Their signature event, the Sandy Sprint Superhero 5K or 10K Run/Walk & Canine Sprint helps in spreading the word about ovarian cancer and raises funds to advance research. The attendees show up to this fun event in their favorite superhero costumes, united in the fight against ovarian cancer. The 2016 Sandy Sprint raised an impressive $285,000 for research funding. Robin credits the success of the event to the way the Philadelphia community has embraced them. The event has grown from year to year, with more than 4,000 people in attendance at the 2016 event. A special part of the day is the survivor ceremony, where each survivor stands on stage and announces their number of years of survivorship; with all the years of survivorship then added up. This year, over 75 survivors shared their experience to have a combined total of 247 years of survivorship! Robin notes this ceremony gives hope to survivors by showing that long term survivorship is not just possible, but attainable.
The Sandy Rollman Ovarian Cancer Foundation also provides programs to support their mission of awareness, advocacy, and support. The newly launched With a Little Help From Her Friends Support Program connects a newly diagnosed woman with a survivor who is comparable in age and diagnosis. The mentors provide one-on-one support through phone calls and in person meetings, ensuring that every ovarian cancer patient receives the support they need and deserve. In fact, many of the women then come back and act as mentors to newly diagnosed women.
Every year, through events like the Sandy Sprint, the Sandy Rollman Ovarian Cancer Foundation funds research to find a cure for ovarian cancer, a screening test for early detection, breakthrough treatments and improve the quality of life for those living with ovarian cancer. This September, the SROCF will reach an incredible landmark- granting over $3.5 million dollars to fund research! Last year the SROCF embarked on their most ambitious project to date; committing half a million dollars to help fund the Stand Up to Cancer Ovarian Cancer Dream Team. The Dream Team focuses on treatments for ovarian cancer patients today and prevention and early detection of the disease. Robin says that this research grant “is a big step, but an exciting one” for the impact it will make on ovarian cancer prevention and early detection. She also says that this commitment to research funding is what they as an organization are most proud of, “that even in the midst of all the sadness surrounding the disease, in some small way we’ve played a role in someone’s survival.”
Since coming together on just a living room floor, the Sandy Rollman Ovarian Cancer Foundation has grown into a well-respected organization dedicated to funding cutting edge research and educating the public about the disease, all while supporting women diagnosed with ovarian cancer and ensuring no woman ever feels alone. What started with two people and one idea has grown into a movement because of people working together and supporting each other.
January 6, 2016
Jeffrey Fisher, MD, a pathologist and principal at friendMD, speaks about the choices he and his wife, Liz, made regarding her treatment. Liz was diagnosed with stage IIIC ovarian cancer in 2011.
Q: How did you learn about immunotherapy options?
Dr. Fisher: When my wife had a recurrence 19 months after finishing her first round of chemotherapy, I did research and discovered other options besides another round of chemo. I was aware of immunotherapy becoming an attractive option to treat ovarian and other cancers and discovered the autologous vaccine clinical trial at University of Pennsylvania.
Although my wife was ultimately excluded from that trial because of post-op complications, we eventually found our way to an integrative oncology practice overseas where the vaccine was prepared from her stored tumor tissue.
Q: Her tumor tissue had been previously stored at the time of her surgery?
Dr. Fisher: Yes, cancer treatment for all tumor types is evolving rapidly, and many of the newer treatments will require viably stored tumor, so it would be foolish to NOT store a tumor. Even though some hospitals may say they store it, they do not do so viably nor do they allow the patient to have access to it – preservation and storage needs to be done with a company that specializes in this technology.
Q: Many patients say their oncologists don’t discuss tumor storage with them. Is this common?
Dr. Fisher: Of course their physicians SHOULD initiate the discussion but, if not, it is incumbent upon the patient to bring up the topic. If their physician discourages them, they should probe as to why. The only possible reason would be cost but that is up to the patient to decide, not the physician. My wife would not have had this opportunity if we had not stored her tumor tissue.
Q: Are cancer vaccines risky?
Dr. Fisher: All treatments should be evaluated on a risk/benefit ratio. There is essentially zero risk in administering an autologous vaccine, so there can be only benefit.
Q: How is Liz doing now?
Dr. Fisher: She is doing great!—no side effects, either local or systemic. The oncologist said that changes in her MRI and CA-125 are consistent with a positive immune response. We couldn’t be more thrilled!
For more information, Dr. Fisher can be reached through his website at www.friendMD.net.
Social Security disability benefits are resources provided by the Social Security Administration to financially help anyone with a serious disease or condition that prevents them from working. All cancer, including ovarian cancer, can potentially qualify for disability benefits.
Any woman with later stage ovarian cancer automatically meets the Social Security Administration’s (SSA) medical eligibility requirements for disability benefits. Ovarian cancer in its early stages can be more difficult to establish as a long-term disability, but it is still possible under some circumstances to qualify for SSD.
Medically Qualifying with Ovarian Cancer
The SSA maintains listings of impairments in its Blue Book manual. The listing for ovarian cancer appears in Section 13.23 and covers all forms of ovarian cancer, including germ-cell, sarcoma, and carcinoma.
Germ-cell ovarian cancer qualifies under this listing only if it has recurred after initial treatment. With a carcinoma or sarcoma form however, your medical records must show:
- Tumors that go beyond the pelvis, like those that have adhered to the bowels or peritoneal tissues
- Metastatic tumors in the lymph nodes, regional or distant
- Recurrence after initial treatment.
If your cancer meets one of these requirements, then you “automatically” medically qualify for benefits, though you will still need to complete the full application process and the SSA will need to see thorough medical records documenting your condition. Specifically, these records include:
- A formal diagnosis, including onset, treatments, and prognosis
- Pathology and operative reports, if applicable
- Imaging scans, blood work, and other diagnostic reports
- A statement from your physician about your cancer, including clinical observations and a summary of your overall condition
- Treatment side effects and any residual impairments from your illness or your treatments
If your cancer is advanced and inoperable, then your application for benefits will be reviewed more quickly as part of the SSA’s Compassionate Allowances (CAL) program. CAL expedites the process, allowing you to potentially get benefits sooner.
Ovarian cancer that is in the early stages, has not spread, and has responded to treatment does not meet the listing in the Blue Book but you may still be able to get benefits. It will be more difficult to prove disability though and you will need to go through a “residual functional capacity” (RFC).
RFC is a process by which the SSA looks at your everyday abilities to determine if you are so impaired by your illness, treatments, and residual effects that you’re unable to maintain gainful employment. Your medical records play a big part in the RFC analysis, but the SSA will also require you to fill out a “functional report” form. Your physician should also complete a similar report.
These documents allow you and your doctor to explain how your everyday abilities are affected by your medical condition. If the SSA finds you are unable to work in any job, then you can receive benefits despite not meeting the Blue Book listing for ovarian cancer.
Applying for Benefits
There are two types of disability benefits for which you may qualify with ovarian cancer:
- Social Security Disability Insurance (SSDI), which can be applied for online via the SSA’s website OR in person at your local SSA office,
- Supplemental Security Income (SSI), which can only be applied for via a personal interview with an SSA representative.
An appointment is necessary to apply at the local SSA office and can be scheduled by calling 1-800-772-1213, but online applications can be completed at any time.
Community Outreach Manager
The Sandy Rollman Ovarian Cancer Foundation is committed to working towards a world without ovarian cancer, and asks that in the spirit of giving this holiday season, you help make this vision a reality.
You’ve heard of Black Friday and Cyber Monday. December 2 is #GivingTuesday! It’s also the date SROCF was founded. The Sandy Rollman Ovarian Cancer Foundation is one of the partnering charities. Please consider making a 100% tax-deductible donation on #GivingTuesday. Make your secure online donation here or Text the word Teal to 20222 to make a $10 donation. Now, through #GivingTuesday, don’t forget to post your messages to social media using the #loveistrongerthancancer!
There are many ways to donate to us during the holiday season through your everyday activities that is at no additional cost to you!
If you’re an online shopper:
Search the internet with goodsearch.com, choose the Sandy Rollman Ovarian Cancer Foundation as your favorite charity and the search engine will make a donation back to us.
Begin all of your shopping at Goodshop.com. More than 700 of the nation’s top internet retailers have teamed up with GoodShop and will donate a percent of each purchase back to our charity. Add GoodShop to your home browser to make access even easier.
Are you an amazon shopper? Shop at Amazonsmile and Amazon will donate 0.5% of the price of your purchases to the Sandy Rollman Ovarian Cancer Foundation.
Bid on two tickets to the Sold Out Jingle Ball Concert and a chance to meet Shawn Mendes! This is an exciting and fun way to help us. Bid now at https://www.charitybuzz.com/support/1747
Bid on a chance to spend 5 nights in classically romantic accommodations for 6 people at Los Establos Boutique Inn in Panama. Start bidding at https://www.charitybuzz.com/catalog_items/689001
Buy the gift that really counts and shop the Teal Corner today!
Register for the Sandy Sprint Superhero Race and give the gift of registration to a friend too! Register online here.
Join us in fighting this disease so that all of our mothers, wives, sisters, daughters and granddaughters can live in a world free of ovarian cancer.