Small charities are like small businesses: In order to succeed, you need a revenue plan, a supportive board of directors, a niche that doesn’t duplicate your competitors.

In a year when controversy has rocked two major cancer charities — the Susan G. Komen for the Cure and Lance Armstrong’s LiveStrong Foundation — some donors might prefer to give to local “mom-and-pop” charities that tackle cancer on a much smaller level.

Curémonos offered a free, 12-week Livestrong program in Spanish to cancer survivors earlier this year at the Summit YMCA.

The group Curémonos (“Let’s cure ourselves”) focuses on providing support to Latina breast cancer patients. Diva for a Day pampers a patient with a day at a local spa. The Ruth Estrin Goldberg Memorial has been raising money for research since 1948. And the Madeline Fiadini LoRe Foundation honors a family struck twice by the disease.

All of them share one trait: They were founded by a person or group of people whose sheer perseverance outlasted temporary obstacles.

Although Dora Arias of Mountainside says she went into “panic mode” when diagnosed with breast cancer at the age of 39, she had little difficulty getting the information she needed to understand her treatment choices. A native of Colombia, she came to the United States when she was 7 and is fluent in English and Spanish. She’d also worked at JP Morgan as a project manager, so was used to asking questions.

But once she was done with surgery, she couldn’t stop thinking about all the Latina women who didn’t have good health insurance, or fluency in English.

“How do other women do this? That just stayed on my mind,” she said.

The result, nine years later, is Curémonos, a one-woman charity that helps Latinas cope with breast cancer.

That can mean anything from compiling a list of bilingual doctors, connecting the uninsured or under-insured with programs that might help with expenses, to accompanying a patient to appointments to act as a translator. Helping Latina patients is particularly important because they are one of the groups whose cancer is often diagnosed later and can be more aggressive and harder to treat.

She loves the work — “I never get tired of it” — but has found it’s difficult for a fledgling charity to raise money: “No one wants to give to start-ups. People like to give money to someone that’s established, that has a brand,” she said. “The first time I submitted grants and I was declined, I took it personally.”

It would’ve been easier, perhaps, to accomplish her mission of advocacy within some of the large charities. She approached several organizations, but at the time, they didn’t feel there was a need for a program aimed at Latinas.

“Ultimately, that’s when I decided to do it on my own,” she said. “Psychologically, it’s a healing process for me to be able to help these women when they’re so scared.”

It’s hard for new groups to raise money, said Linda Czipo, executive director at the Center for Non-Profits in New Brunswick. Big charities have a track record and name recognition that gives them a head start in securing donations. “And it’s been really hard for even well-established organizations in this climate,” she said.

Sometimes, people want to keep a loved one’s name alive, but don’t feel up to running a charity indefinitely. They might consider setting up a legacy scholarship within an existing organization, Czipo suggested.

If they have an idea for a specific service to provide, they also might see if they could partner with a bigger charity. In that way, they’d get help with adhering to the special laws and regulations that govern charitable taxes and solicitation.

“Not everyone wants to be involved in that side of things at all,” she said.

Peggy Matzen, of Basking Ridge, became buddies with Debbie Sestokas, of Warren, when they both volunteered for the American Cancer Society after they were done with their own breast cancer treatment. They both had five children and received the same treatment for their cancer.

One week, as they were helping a patient who had just received devastating news of a cancer recurrence, they left wishing there was something more they could do for her. “One of us said, ‘Wouldn’t it be great if we could send her to a spa for a day?’ It was one woman and one thought,” Matzen said.

They were going to split the cost, but from that episode, brainstormed to form a charity, Diva for a Day, that arranges for local spas to donate their services once a month to a patient in the midst of treatment. A local restaurant delivers lunch and a local florist donates a bouquet as well.

“No one’s ever said ‘no’ to us,” Matzen said. Local businesses are more than willing to help in ways besides writing a check.

Initially, they wanted to work through a local hospital, but soon discovered that brought with it too much red tape and liability roadblocks.

Their participating spas are in southern Morris and northern Somerset counties. They’ve already received requests to expand their program to more towns and are trying to build of a network of volunteers to make that possible.

The Madeline Fiadini LoRe Foundation pays for cancer screening tests for people who have no insurance coverage, but do not qualify for government aid. Anyone who meets their criteria can get a free PSA test, mammogram, colonoscopy, cervical cancer screening, oral cancer screening or genetic testing at the foundation’s participating hospitals or dentists.

Madeline Fiadini LoRe, of Bayonne, is a two-time cancer survivor. She first raised money to honor her brother John, who died of liver cancer. Bayonne Hospital’s outpatient oncology center is named for him, while its women’s center is named for her.

“I’m motivational. I’m tenacious,” she said, explaining that she worked her way up from hairdresser to co-owner of an insurance agency. When Bayonne Hospital became a public, for-profit hospital, she could no longer raise money directly for it. Instead, she formed her own foundation in 2008 to cover gaps in funding for the working poor. “I felt it was important to pick up the slack.”

Her biggest problem, she said, is getting the word out about their services. “We have money,” she said, “and we want to spend it.”

Older charities, no matter what their size, have to change and adapt, Czipo said. The classic example is the March of Dimes. Started to raise money to battle polio, it switched its mission to birth defects once polio was eradicated.

“It’s easy to get stuck in a rut,” Czipo said. The best founders retain their passion, yet have a willingness to change with the times.

The Ruth Estrin Goldberg Memorial For Cancer Research was formed by eight friends mourning the cancer death of their 28-year-old friend.

That was 64 years ago, and the group is still going. Not going strong, but going nonetheless.

It gives all of its money to cancer research, with researchers submitting grand proposals to a board of physicians that advises the Springfield-based charity.

The most recent recipient is Manisha Bajpai, a colon cancer researcher at Robert Wood John Medical School of University of Medicine and Dentistry of New Jersey.

At its height in the 1950s and ’60s, the Springfield-based organization had more than 500 members who staged a parade of annual fundraisers: golf outings, fashion shows, an annual ball. The charity has been a mainstay in Jewish philanthropic circles, although it is not a Jewish organization nor need a member be Jewish.

Four of the eight founding members are still alive, but chairwoman Jennifer Weisenthal, of Woodbridge, said the roster shrunk when working women no longer had time to do a lot of hands-on organizing for charities.

Members from that era are now in their 80s and some kinds of fundraising are beyond their abilities. “When they say they can’t do something, they mean it. They can’t,” Weisenthal said. However, one member well into her 90s still vigorously shakes a donation can outside a local business.

She recently broached the topic of disbanding, but met with strong resistance. “They don’t want to give it up,” she said. “They just don’t.”

You can find the original article here http://www.nj.com/news/index.ssf/2012/10/small_cancer_charities_pack_a.html

She was referred there by Dora E. Arias, founder of the Latina breast cancer support group Curemonos, which partnered this year with Sofis to give women with breast cancer a free day of beauty.

Arias, a cancer survivor herself said, “This year we got women together who are in the middle of their treatment or have just been diagnosed with breast cancer.

“We want to be there for them and to let them know they are not alone.”

Izaida is in the middle of their treatment.

She had invasive breast cancer that was detected through a routine mammogram.

At the time of her diagnosis only her right breast presented cancer but she opted for a double mastectomy to avoid any recurrence. Something she was glad she did.

“I am so glad I had both breasts removed because during the operation the doctors found that the left breast also had cancer but it was hidden. It would have been too painful to face this diagnosis again,” she said.

It was a day to feel beautiful also for Luz, Wilma, Luisa Janeth, Genney, Karen, and Patricia. The women received free facials, manicures, haircuts, and styling during a day of pampering by owner Sofia Perez and her children Christine and Christopher.

But the women were also there to network and to find out more about the disease and services available to them. For many, this was the first time they were talking to other Latinas like them.

Luz was diagnosed with an aggressive form of breast cancer, and has received treatment. She said she desperately wanted to talk to someone about what she was feeling and thanks to a friend at work she was able to connect to Curemonos.

“I am very fortunate to have found Curemonos, I was feeling awful. It wasn’t the cancer anymore but dealing with what I had just gone thru. Worrying about my 18-year-old daughter and my eight-month granddaughter and asking if they were going to be victims too.”

Karen was the only one in this group who did not receive a cancer diagnosis but given her family history and the results of genetic tests called BCRA 1 and BCRA 2, she opted to have both breasts removed and her ovaries. She opted to take preventive care instead of facing a future cancer diagnosis.

The women were visibly renewed by the experience at Sofis where other businesses also cooperated to make the women’s day a special one. The women received t-shirts, totes, and make-up from Neiman Marcus, Bobbi Brown at Neiman Marcus, and Ford Warriors in Pink. Manhattan Bagel, Stew Leonard’s Wines of Springfield, Village Trattoria, Italian Restaurant and Pizzeria, The Wine Library provided food and refreshments.

In her quest to help Latinas, Arias, has traveled to Washington D.C. to speak before Congress about the issues affecting diagnosis and treatment of women with breast cancer. According to Arias, “70% of the women who receive double mastectomies are not getting reconstruction surgery, something that is the law and insurance companies must cover,” she said.

She is also expanding her services to Essex and Hudson Counties. Her goal is to provide services to a wider group of Latinas who are not getting the support and services they need.

Arias will be featured in public service announcements regarding breast cancer on Telemundo and Ford’s Warriors in Pink.

*Key facts about breast cancer from the American Cancer Society:

There are 2.9 breast cancer survivors since the United States and although the disease has been in decline, breast cancer is the most common cancer among American women, except for skin cancers.

About 1 in 8 (12%) women in the US will develop invasive breast cancer during their lifetime.

The American Cancer Society’s most recent estimates for breast cancer in the United States for 2012 are:

About 226,870 new cases of invasive breast cancer will be diagnosed in women.
About 63,300 new cases of carcinoma in situ (CIS) will be diagnosed (CIS is non-invasive and is the earliest form of breast cancer).
About 39,510 women will die from breast cancer
For more information visit the American Cancer Society http://goo.gl/ucpmb

To contact Dora E. Arias or Curemonos call 908-264-9199 or visit www.curemonos.org

Read original article found in SummitPatch

SPANISH/En Español

Izaida Rosa-Garbanzo estuvo en el salón de belleza Sofis en Summit para celebrar el hecho que se sentía mejor tras su doble mastectomía por el cáncer del seno.

Ella fue allá por medio de Dora E. Arias, fundadora de Curémonos, un grupo de apoyo para Latinas con cáncer del seno, que este año se unió con Sofis para dar a las mujeres un día libre para enfocarse en su belleza.

Arias, sobreviviente de cáncer del seno también, dijo, “este año seleccionamos a mujeres que están en medio de su tratamiento o que recientemente han sido diagnosticadas con cáncer del seno.

“Queremos estar aquí para ellas y avisarles que ellas no están solas.”

Izaida está completando su tratamiento. Ella fue diagnosticada con cáncer del seno invasivo que fue detectado por medio de un mamograma anual.

En el momento de su diagnóstico sólo su pecho derecho presentó el cáncer pero ella optó por una doble mastectomía para evitar cualquier repetición. Algo que ella se alegra haber hecho.

“Estoy tan contenta de haber optado por la doble mastectomía porque resulta que durante la operación los doctores encontraron que el pecho izquierdo también tenía el cáncer pero estaba escondido. Habría sido demasiado doloroso afrontar este diagnóstico otra vez,” dijo ella.

Este fue un día para sentirse hermosas y bellas también para Luz, Wilma, Luisa Janeth, Genney, Karen, Patricia y las demás mujeres que recibieron faciales, el manicura, cortes de pelo, y estilo por parte de Sofía Pérez y sus hijos Christine y Christopher.

Pero las mujeres estuvieron allí también para conectarse con otras mujeres y hablar de su condición e informarse de los servicios disponibles. Para muchas, esta fue la primera vez que ellas se dirigían a otras Latinas como ellas.

Luz fue diagnosticada con una forma agresiva de cáncer del seno conocido como triple negativo, y ha recibido el tratamiento. Ella dijo que estaba desesperada por hablar con alguien sobre lo que ella sentía y gracias a un amigo en el trabajo pudo comunicarse con Dora E. Arias y unirse a Curémonos.

“Soy muy afortunada en haber encontrado a Curémonos, yo me sentía horrible. No solo era la preocupación del cáncer sino la preocupación de que mi hija de 18 años y mi nieta de ocho meses pudieran también estar expuestas. Pero gracias a Dios las pruebas genéticas dijeron que no.”

Karen fue la única de las mujeres que no recibió un diagnostico de cáncer mas sinembargo opto por una doble mastectomía mas la extirpación de sus ovarios. Karen tiene historial de cáncer en su familia y su mama y una tía perdieron su batalla contra el cáncer del seno. Ella se sometió a dos pruebas genéticas que pueden afirmar o no si la persona esta dispuesta a esta enfermedad. Las pruebas llamadas BCRA 1 y BCRA 2, lamentablemente demostraron positivas, significando que ella esta dispuesta a desarrollar el cancer y por eso su decisión.

Las mujeres se veían renovadas por la experiencia en Sofis donde también otros negocios del área participaron y cooperaron para hacer de su día uno muy especial.

Las mujeres recibieron camisetas, maquillaje de Bobbi Brown en Neiman Marcus, y Guerreros de Ford en Rosado. Manhattan Bagel, Stew Leonard’s Wines, de Springfield, Village Trattoria, Italian Restaurant and Pizzeria, The Wine Library proporcionaron alimentos y refrigerios.

En su búsqueda por ayudar a las Latinas, Arias, ha viajado a Washington D.C. para hablar ante el Congreso de los EE.UU. sobre las cuestiones que afectan el diagnóstico y el tratamiento de mujeres con el cáncer del seno. Según Arias, “el 70 % de las mujeres que reciben doble mastectomías no consiguen la cirugía de reconstrucción, algo que es la ley y las compañías de seguros deben cubrir,” dijo ella.

Ella también esta ampliando sus servicios a los condados de Essex y demás con el objetivo de ayudar a mas mujeres y proporcionarles los servicios que necesitan.

*Datos claves sobre el cáncer del seno de la Sociedad Americana del Cáncer:

Hay 2.9 sobrevivientes de cáncer del seno en los Estados Unidos y aunque la enfermedad ha estado en decadencia, el cáncer del seno es el cáncer más común entre mujeres americanas, excepto los cánceres de la piel.

Aproximadamente 1 en 8 mujeres (del 12 %) en los EE.UU. desarrollará el cáncer del seno invasivo durante su vida.

Las estimaciones más recientes de la Sociedad Americana del Cáncer sobre el del cáncer del seno en los Estados Unidos para 2012 son:

• aproximadamente 226,870 nuevos casos del cáncer del seno invasivo será diagnosticado en mujeres.

• aproximadamente 63,300 nuevos casos de carcinoma en situ (CEI) será diagnosticado (CEI es no invasiva y es la forma más temprana del cáncer del seno).

• aproximadamente 39,510 mujeres morirán de cáncer del seno

Para mas informacion visita http://goo.gl/ucpmb

Para comunicarse con Dora E. Arias o Curemonos llamar al 908-264-9199 o visite www.curemonos.org

Read original article found in SummitPatch

Curémonos engages Latina breast cancer survivors to provide education, advocacy, peer support, patient navigation and interpretation services to other Latinas affected by cancer. Curémonos helps ensure seamless, coordinated care and services, as well as timely access to care. They also provide Latinas timely access to the same programs and resources available to the English speaking community. The organization’s partners include Overlook Medical Center, Nueva Vida in Washington, D.C., and the YMCA in Summit.

Read full article here

Dora Arias, founder of the non-profit organization Curemonos, Inc. (which means Healing Ourselves in Spanish) and a few volunteers are dealing with the demand for help. But Arias said, “We are at full capacity. The need is so great, I work long hours, but I cannot ask volunteers who work twenty hours a week, to do more without pay. I need more funding.”

“Women are calling us from Newark and from other locations, without insurance, without medical assistance, without a doctor to help them know what the lump in their breast means, and without access to mammograms and counseling for support.”

Read full article here

More than 500 people completed the run in an effort to raise funds for the LIVESTRONG program, a national program that is offered locally only at the YMCA of Berkeley Heights.

Read full article here.

The women laughed and talked as they waited to get their hair, makeup, nails, facials and massage. They were taking part in “A Day to Celebrate Life” that for the first time brought Latina cancer survivors and patients together to take part in a day of pampering and beauty treatments at Esperanza’s Salon and Spa in Summit.

The event was part of Breast Cancer Awareness Month organized by Esperanza’s Salon and Spa, Curémonos and local businesses. The organizers noted that the goal of “A Day to Celebrate Life” is to help women feel beautiful and better about themselves.

Read the full article here.

Read event flyer

Activities for breast cancer survivors include:

• The talented Esperanza and her staff will provide haircuts, styling and mini-facials.
• Complete makeover by the fabulous make-up artist, Karen Scaff from Bobbi Brown at Neiman Marcus.
• Reiki session by Reiki Master, Maria Arias.

Read Event Flyer

The satellite facility will offer one digital mammography machine and ultrasound, according to Wexler, as well as a mobile stereotactic breast biopsy unit two days a week. A part-time nurse navigator will guide patients through whatever tests they need.

“We have the ability in Sussex to do all the diagnostic examinations,” Wexler said. “If a patient is diagnosed with cancer, we then can bring her into Cancer Care at Saint Clareʼs.”

Meanwhile, Overlook Medical Center in Summit last fall became the North Jersey base of a nonprofit group called Curémonos (“Healing Together”), dedicated to reaching uninsured Latinas with breast health concerns and a language barrier. “Breast cancer is the leading cause of death among Latinas,” said Dora Elena Arias, the groupʼs founder and executive director. “Latinas are diagnosed at a very young age and usually at a later stage.” A Latina breast cancer survivor and former business analyst, Arias now works as a community health worker, taking in clients through word of mouth, health fairs, doctorsʼ referrals and the Curémonos phone line.

Read Full Article