Have Fun! Save lives! Volunteer!

26 Feb

We are so excited to finally share our 2016 Calendar and Volunteer Opportunities with you!!

Click here to see our 2016 Community Calendar

Sign up for the upcoming event: KWQC Women’s Health Fair (March 5th)

Our Sisterhood of the Teal Tiaras is our volunteer force that provides an outlet for survivors and those who are affected by or have lost a sister, daughter, wife, mother or friend to ovarian cancer. Our Teal Warriors are vitally important to our mission and present our programs through health fairs, speaking engagements, publicity and many other community and administrative activities. Membership is free and anyone can join . . . even men.

Community Events — Throughout the year, we participate in community events geared toward women and healthy lifestyles where we sell our Bling4Cancer jewelry. Most of these activities take place during evenings and weekends; volunteer shifts are typically 2-4 hours each. Volunteers in these areas are crucial to our success:

  • Distribute BEAT symptom cards to the general public
  • Assist with Shop Bling4Cancer sales
  • Communicate the need for early detection with booth visitors
  • Set up and decoration for special events

Administrative — These volunteers provide administrative support in many different ways with projects that provide great flexibility in scheduling. Many can be done during non-business hours at home, while others will require time in our downtown Rock Island office. If you can assist, call us anytime!

  • Marketing (publicity, social media, website)
  • Administrative (database, accounting, research, volunteer scheduling)
  • Fundraising (grants, events, ad hoc opportunities)
  • Letter stuffers, inventory takers, craft-lovers, too!

Program Support — We have several on-going projects which need active brains (for new ideas), warm bodies (to help with distribution), and superb people skills (to identify and make contacts). TEALTown September is the umbrella name for the projects taking place during National Ovarian Cancer Awareness Month. Our BEAT the Big O and RULE OUT Ovarian Cancer programs aim to educate both women and the medical community about the disease. Our Sister2Sister is a new program that connects survivors across the country. These programs are vital to our mission; volunteers are needed both during and outside of office hours at various locations, depending on your interests.

No-hassle Jobs — If you can’t commit to volunteering for a specific project just yet, we have no-hassle jobs that just about anyone can do, any time. We’re always open to new ideas and opportunities!

  • Distribute BEAT the BIG O symptom mirror cards
  • Invite us to speak at a group of women you know
  • Join our TEAL Connection Facebook community
  • Like our Facebook page and share our posts
  • Follow our blog https://normaleahfoundation.wordpress.com
  • Forward our e-mail blasts
  • Come to our events and bring a friend
  • Wear teal (especially on Tuesday) and tell everyone why
  • Get an Illinois or Iowa OVCA Awareness License Plate
  • Make a Memorial Gift or DONATE (we are a United Way donor designated fund)

Volunteer and help us save lives!

2NormaLeah 2016 Volunteer Calendar

 

girlpARTS FEST Announced!

13 May

We are so happy to announce our upcoming event!

girlpARTS FEST

N.E.D. ,“No Evidence of Disease”, a rock band comprised of six musicians from across the country whose day jobs are as gynecologic cancer surgeons, will be rocking the banks of the Mississippi River this summer at NormaLeah Ovarian Cancer Foundation’s first-ever “girlpARTs FEST” at Schwiebert Riverfront Park in Rock Island on Saturday, July 11 from 4 to 10 p.m. . The event is using the arts to create awareness of gynecologic cancers and features three live bands and twelve visual artists. It is an all ages event; general admission is $10 with children under 12 admitted free.

KWQC-TV’s Paula Sands will emcee the evening, which includes the nationally-known band, N.E.D.. Local bands Soul Storm and Barstool Boogaloo will provide music as the warm-up acts and local performers will make cameo appearances. A “Dirty Dozen Invitational” will feature twelve local female artists showcasing and selling their artwork. They represent a variety of different mediums.

A silent auction and raffle at the event will raise funds for “RULE OUT! Ovarian Cancer”, a medical education program which is being introduced in the Quad Cities in September 2015. Several members of N.E.D. are presenting free educational programs for local physicians as part of their visit. Sponsorships and cross-promotion opportunities still exist for companies who wish to get involved. CLICK HERE TO BECOME A SPONSOR OR DONATE AN AUCTION ITEM.

Volunteer for the event and get free admission and a t-shirt. CLICK HERE for the volunteer form.

New guidelines for ovarian cancer treatment from the Society of Gynecologic Oncologists

8 Aug

Woman in robe in hospital bed

A new guideline issued by the Society of Gynecologic Oncology (SGO) and American Society of Clinical Oncology (ASCO) provides evidence-based recommendations on whether to use chemotherapy or surgery in the initial treatment of women with epithelial ovarian cancer. Epithelial ovarian cancer is when cancer cells form in the tissue of the ovary and accounts for 70 to 80 percent of all ovarian cancers.

The following are the key guideline recommendations issued:
  • All patients with a possible diagnosis of advanced stage (III or IV) ovarian cancer should be evaluated by a gynecologic oncologist PRIOR to starting any therapy.
  • A gynecologic oncologist will determine if surgery is an option prior to chemotherapy.
  • The goal of surgery is to remove all visible tumor to less than 1 cm, ideally to no visible disease.
  • Neoadjuvant chemotherapy (chemotherapy given prior to surgery) should be offered if there is little chance to remove all visible tumor OR if the patient has a high complication risk from surgery.

Additional information is available BY CLICKING HERE.

September 2016 events announced!

5 Aug

We are so excited to announce our three events for National Ovarian Cancer Awareness month in September. We hope you can join us at one of them!

Monday, September 5 — Rock Island Labor Day Parade

Labor Day 2015.JPG

Please join us on Monday, September 5 to kick off Ovarian Cancer Awareness Month at the Rock Island Labor Day Parade. The parade usually kicks off about 9:30 a.m. and finishes at 11:30 a.m. We will send more information closer to the date, but appreciate you signing up here to ensure there is a t-shirt for you. Once again, we are proud to be sponsored by Country Financial!    Click here to register!

Saturday, September 10 — Ovarian Cancer Race for Awareness at Arlington International Racecourse in Arlington Heights, Illinois

Website Banner Race for awareness

Join us at Arlington Park’s private party venue, Silks at 2200, a casual fun atmosphere. Included with your ticket is a delicious lunch, a full day of racing, convenient betting facilities, silent auction and much more!

All proceeds from this event will support research through Stand Up to Cancer’s Ovarian Cancer Dream Team and NormaLeah’s efforts to educate all women and the men who love them about this deadly disease.

Tickets are $125 each and available by  CLICKING HERE.

Can’t join us but want to make a donation? CLICK HERE.

How about donating a silent auction item? CLICK HERE.

Saturday, September 17 — Run for Jess/girlpARTs fest at Cahoon Park in Bay Village, Ohio

run for jess girlparts fest website banner.png

We’re raising funds and awareness of gynecologic cancers through this unique event!

The Run for Jess starts at 11 am from Cahoon Memorial Park along the banks of Lake Erie, followed by a girlpARTs fest from noon to 7 pm which uses the arts to raise awareness of gynecologic cancers.

Any race registrations received by August 30 will receive a free raffle ticket for some great prizes. The cost to participate in the race only is $30. Participants purchasing a girlpARTs fest ticket at the time of registration will receive a $10 discount on their girlpARTs fest ticket.

To register for the 5K Run/Walk, CLICK HERE

The girlpARTs fest begins at noon and features performances by Ice Cream Truckers, Carlos Jones and the Plus Band, Natural Wonder and a possible appearance by Caly Bevier—a teen ovarian cancer survivor who is a finalist in America’s Got Talent competition. It will also feature 12 visual artists showcasing their products and various food trucks for meals and refreshments.  There will be a survivor recognition ceremony for all cancer survivors. The festival is suitable for all ages; general admission is $20 ($25 at the door). Children under 5 admitted free and tickets for ages 5-12 are $10.

girlpARTs fest tickets are available by CLICKING HERE.

This inaugural event is being organized by Greg Gogul, a Bay Village resident, who lost his 28-year-old wife to ovarian cancer and the NormaLeah Ovarian Cancer Initiative based in Rock Island, Illinois.  Funds raised will be distributed to the Small Cell Ovarian Cancer Foundation, the Village Project (a Bay Village organization that serves meals to families experiencing cancer) and also support NormaLeah’s efforts to educate all women and the men who love them about ovarian and other gynecologic cancers.

CLICK HERE TO VOLUNTEER OR BE A SPONSOR.

 

The Angelina Effect: You Go Girl!

25 Mar

angelina jolie

I had the pleasure of speaking with Angie Sharp from WQAD-TV in the Quad Cities about how Angelina Jolie’s actions will change the conversations about ovarian cancer, genomics, and women’s health issues in general.

Women are fortunate to have such a high-profile “celebrity” open this dialogue about gynecologic health. As a carrier of the BRCA mutation, I have faced those same decisions, researched the same options and taken the course of action that was right for me.

I stand beside Angelina in solidarity and without ovaries or fallopian tubes. We stand together with the hope that we will live long enough to dance at our grandchildren’s weddings — unlike our mothers.

Read the text of her interview and watch the newscast by clicking here.

Raising our Voices and Giving Hope Even as We are Silenced

2 Dec Our family wishes you a healthy, happy and hopeful holiday.
Our family wishes you a healthy, happy and hopeful holiday.

Our family wishes you a healthy, happy and hopeful holiday.

I was so very saddened these past few weeks reading about the deaths of several teal warriors. One I had met briefly at a local Gilda’s Club support group; I tried to reach out to her but she didn’t grab on to my hand. Another was woman I knew through a Facebook ovarian cancer support group. The last was  media darling Diem Brown of MTV and People magazine fame.

The deaths underscore my belief that the only thing truly silent about ovarian cancer is the women whose voices can no longer speak. And, it makes me question whether there really is a norm for a cancer that has more than 30 different sub-types and strikes women of any age. Statistics state that the average age at diagnoses is 63 years. Two of these women were 32 and 51 — certainly outside the normal parameters.

This fact doesn’t ease the memory of my mother or aunt’s battle with this disease even though they were almost spot on the average age. And I know (all too well) the feeling of helplessness that surrounds the women afflicted by ovarian cancer as well as their loved ones. Yes, I miss my mother and aunt again this holiday season,  but instead of taking a “woe is me” attitude, I focus on being thankful that I can channel my energies toward saving and enriching other women’s lives.

I will continue to raise my voice against this horrid disease by warning women about the ever-so-subtle symptoms of ovarian cancer . . . by educating medical professionals (not just doctors but nurses too) about the importance of ruling out this deadly disease before considering less life-threatening ones . . . by embracing our all-too-few survivors and giving them a voice . . . by making noise anyway I can . . .  the list goes on and on and everyone is invited to join me.

For too long, women’s health issues have been swept under the rug and ovarian cancer was really buried under a plush shag carpet. I now understand why ovarian cancer survivors often feel like second-class citizens in the cancer world. Simply put, nobody talks about this type of cancer unless they have it — and there are so few survivors since most diagnoses are made at late stage disease.

But I see hope. I see past the fact that we don’t have a universally-acceptable screening test and that treatments are becoming either less effective or more cost-prohibitive. I watch as promising research findings are released , as more women become vigilant advocates for their health, as healthcare professionals learn how to rule out ovarian cancer, and as survival rates inch ever so slightly up that chart.

It may not be so obvious in the case of our newest teal-winged angels. We wish them peace and applaud their contributions to the shifting ovarian cancer landscape. Diem Brown’s commitment to establishing MedGift, a charity that helps patients pay for treatments, has perhaps encouraged another organization, the Patient Advocacy Foundation, to recently expand its program to women with ovarian cancer.

We are also given hope by the frequent announcements of new clinical trials for ovarian cancer detection or treatment and I encourage survivors to participate in them as well. Who knows? It may save their life. And, if not theirs, then perhaps another woman’s down the road. Please visit one of these resources and help give hope this holiday season.

Patient Advocacy Foundation: http://www.copays.org/

Diem Brown’s Medgift: www.medgift.com

Ovarian Cancer Clinical Trials: https://partners.emergingmed.com/FightOC/

About us: www.normaleah.org or visit us on Facebook at http://www.facebook.com/NormaLeahOvarianCancerFoundation

 

Image

Think Pink and Feel Teal

7 Oct

Bookmark FB

Happy TEAL Tuesday! It’s the first one in October, the month where breast cancer awareness shines brightly to remind us about our breast health. I thought it an appropriate time to shed some light on the kinship between breast and ovarian cancer and the true closeness between pink and teal sisters. I write with the hope that the marketing mavens who dreamt up some of those “Pink-tober” merchandising tie-ins might give our teal sisters the recognition they deserve next September during ovarian cancer awareness month. Although for many of us (like me) awareness is a year-round activity as we are always working hard to save lives regardless of what “color” the month or day might be.

Ovarian cancer has neither a screening test nor a cure, and all women – especially breast cancer survivors — need to know the sad but true facts about the close link between the two cancers. The Angelina Jolie effect has underscored the BRCA gene connection, but it is my job, as an ovarian cancer activist, to tell our “pink” sisters how they might be at a higher risk for ovarian and other cancers such a colorectal, pancreatic and melanoma to name a few.

I know more than just a little about these higher risks since I inherited my mother’s BRCA2 mutations and am a proud ‘previvor’ of ovarian cancer. By having my ovaries removed (called a salpingo-oophorectomy), I reduced my risk for ovarian cancer from 40% to 3% — which is still twice that of the average population. I am also at a much higher risk for breast cancer than the 12% average for most women. Conversely, breast cancer survivors (previvors, too) have a much higher risk for ovarian cancer – many up to a 55% risk. I wonder how many breast cancer survivors know these facts because they certainly aren’t spelled out on the pink ribbons adorning the packages of the food we eat or the detergent we use to wash our clothes.

That being said, we need to applaud the strides made through breast cancer advocacy during the past 25 years and understand that it comes from them having more critical mass, which in turn, generates more money. There are more than 2.8 million women with a history of breast cancer in the United States compared to about 188,000 women who are living with ovarian cancer. We must keep in mind, too, that each year almost twice as many women die from breast cancer as are being diagnosed with ovarian cancer. Nevertheless, breast cancer boasts a 92% survival rate while the survival rate of ovarian cancer is less than 30%. I’ll let you do the math to determine the disparities that exist in the loudness of our voices.

In reality, despite the popular misnomer that ovarian cancer is a silent disease, the only thing(s) silent about it are the voices of women, like my mother and my aunt, who lost their lives to this disease. I sometimes think ovarian cancer awareness is but a drop of teal sand in an ocean of pink. It is my hope that, with a collective roar and increased research funding, we will look back in 25 years and see a tremendous amount of progress on ovarian cancer awareness, detection and treatment. Imagine the day, if you will, when a screening test is a routine part of every woman’s annual gynecologic exam!

We must thank our pink sisters for helping us pave the way. People now talk openly about boobies and tatas. There aren’t any really good nicknames for ovaries, but public discussions about “below the belt cancers” are becoming more frequent. The research funding poured into breast cancer has been a big boost for our disease, too. In fact, the Department of Defense’s ovarian cancer research program was created out of breast cancer initiatives. Ovarian cancer survivors also benefit from some of the treatments that originally were discovered for breast cancer. (Think Avastin.)

So . . . instead of begrudging the out-of-control marketing efforts our pink sisters must endure in October . . . I hope bloggers (like me) will use it as an opportunity to open a dialogue about the link between breast and ovarian cancer and share these important facts with ALL of our sisters: Ovarian cancer does have symptoms. Women without ovaries can still get ovarian cancer. A pap test does not detect ovarian cancer. Breast cancer survivors are at a much higher risk for ovarian cancer.

It has always been my belief that sisters share a lot of things but cancer should not be among them. I urge all women to be vigilant self-advocates for their health every day of every month. We know our bodies better than anyone else and we must be “o”ware of any subtle changes that persist for  more than two weeks.

Please THINK PINK and FEEL TEAL this October.

We’re BEAT-ing Ovarian Cancer!

23 Sep

This very special edition of TEALTuesday Gazette is brought to you in celebration of September, National Ovarian Cancer Awareness month. TEALTown September as we like to call our efforts has been our biggest and best ever with so many great efforts, not only locally in the Quad Cities, but across this great nation of ours as well! As the founder and executive director of the NormaLeah Ovarian Cancer Foundation, I am truly grateful for every teal warrioGala FB ad2r that has joined our renegade efforts to make EVERY WOMAN aware of the symptoms and risks of this insidious disease.

Our efforts began on August 20, when 18 volunteers from United Way’s Day of Caring helped distribute 200 TEALTag window clings to businesses in the Quad Cities. A few days later, one of our Teal Warriors posted a photo of it in some ovarian cancer chat groups on Facebook and we were swamped sending almost 1500 TEALTags to women in almost every state in the nation. It also depleted the last of our 100,000 BEAT symptom mirror cards but we made a quick recovery and by the time we kicked off the month on September 1 at the Rock Island Labor Day parade, our 25 walkers had plenty of cards to distribute.

Last week the media spotlight shined down on us with an appearance on Paula Sands Live at KWQC-TV6, Deirdre Baker’s Quad City Times story about the changing landscape of ovarian cancer, a shout out by David Burke at the Quad City Times and a “preview” of N.E.D. the Movie by Jonathan Turner at the Dispatch/Argus. This past Sunday, our community awareness program was a film screening of N.E.D. the movie.

All month long, we’ve shared daily facts with our friends via our Facebook page and the latest “post reach” count is approaching 15,000. THANK YOU to everyone who has shared, reposted or commented on our information. I thoroughly enjoyed the banter on some of the more controversial posts and am delighted when women contact us with questions. We drove our message home  with a letter appearing in Annie’s Mailbox (formerly Ann Landers). I couldn’t think of a better platform to speak to women and the men who love them!

We still have a week left, so watch for NormaLeah sightings in the Quad Cities and Iowa City. Please join us on our journey to BEAT the BIG O, especially on Saturday, Spetember 27 at our gala; we will have a very special presentation that I am so excited to share with everyone. If you can’t join us, you can contribute to our efforts by CLICKING HERE or visiting us at http://www.normaleah.org

We’ve kicked off Ovarian Cancer Awareness Month Successfully!

3 Sep

parade front

Happy Septemberversary . . . a month to celebrate our teal warriors. Yes, that’s a made-up word, but after sending out 1500 TEALTag window clings to women across the country, I needed a good stiff drink and that word is the result of my efforts.

We have begun our TEALTown September activities in observance of National Ovarian Cancer Month. They are call thusly because teal is the designated color for ovarian cancer awareness. Please show your awareness support by wearing teal on National Wear Teal Day on Friday, September 5.

Our month-long efforts kicked off at the Rock Island Labor Day Parade on Monday. We are working with local businesses to display TEALTag window clings, have asked local newscasters and reporters to wear a teal ribbon and are participating in “weekend casual” days at local offices such as United Healthcare. We are also hosting a film screen of NED the Movie at the Figge Art Museum on September 21 at 2 p.m. which is sponsored by Massage Envy and Paragon Commercial Interiors. We close out our month-long efforts at their gala fundraiser “A Night to BEAT the BIG O” on September 27th at Crow Valley Golf Club. Tickets are $50 and the evening will feature food by Chef James, entertainment by Soul Storm, auctions and a raffle. You can also catch us on Paula Sands Live on September 16, at Bettendorf Rotary on September 17 among others yet to be announced.

For more information or to get involved with TEALTown September efforts call the NormaLeah Ovarian Cancer Foundation at 309.794.0009, visit our website at http://www.normaleah.org, or email us at normaleahfoundation@gmail.com

KEEP AN EYE ON YOUR EMAIL OR LIKE OUR FACEBOOK PAGE to see what else is happening this month as we rise up against ovarian cancer in true NormaLeah style. (Don’t trust our schedule on this blog . . . it’s outdated and we are so busy making women aware of ovarian cancer that we haven’t had time to update it!)

Pseudo-Teal Tuesday Gazette

1 Jul

It’s only Tuesday, but this week has already seen its share of news for our ovarian cancer community. Instead of publishing a Teal Tuesday Gazette, I thought I would proffer some ponderings about national news and its effect on ovarian cancer. . .

Yesterday, the Supreme Court ruled that “closely-held” corporations, based on the owner’s religious beliefs, may opt out of the Affordable Care Act provision to provide oral contraceptives. While I see value in upholding the Religious Freedom Restoration Act, I think we need to make a distinction between oral contraceptives when used as a means of birth control and when administered for other reasons such as pre-menstrual syndrome, endometriosis, amenorrhea or to lessen a woman’s risk of ovarian cancer by as much as 50 percent.  At the risk of being trite, I see the BIG question as . . . if I continue to shop at Hobby Lobby, will they provide their employees (keep in mind that most of them are women) with coverage for oral contraceptives if they are being prescribed for one of these other reasons?

Another affront to the early detection of ovarian cancer appeared in the Washington Journal yesterday in its report that the American College of Physicians (ACOP) said low-risk, healthy women who are not pregnant do not need routine pelvic exams. A rebuttal from the American College of Obstetricians and Gynecologists emphasizing the importance of routine pelvic screenings and that doctors should continue to perform them is perhaps the silver lining in this cloud.

The logic behind this dictate from the ACOP  seems silly; most women are healthy and low-risk until a screening shows otherwise. Because the symptoms of ovarian cancer are subtle and not always indicative of a life-threatening situation, this news is especially disconcerting. Proper knowledge about our bodies and our reproductive system is empowering and this simple exam can save lives. Women need to be vigilant self-advocates for their health; we can’t rely on the government and doctors to make such decisions for us.

I know it’s a hard hill to climb. Now more than ever, it is important to educate the public on how the benefits of oral contraceptive extend beyond birth control and how a pelvic screening, along with a trans-vaginal ultrasound and CA-125 blood test (when indicated) are among the best ways to detect ovarian cancer.

In a few weeks I will be climbing Capitol Hill with other members of the Ovarian Cancer National Alliance as the conclusion to their annual conference. One of our goals is to ensure the Senate matches the $20 million allocated for the Ovarian Cancer Research Program in FY15 which was recently passed by the House. Let’s keep hope alive that someday there will be an early detection test for ovarian cancer that is acceptable and accessible to all women.

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