Welcome
Hello everyone and welcome to my BRCA website for previvors and survivors. On May 23, 2008 previvorsandsurvivors.com was born & now, this October 2010 previvorsandsurvivors.com, Inc. a Not for Profit group has been created.
We are a 501 (c) (3) ALL VOLUNTEER GROUP where no one here gets paid or gets compensated in any way for their services.
The mission of our group is to provide the support, skills & resources to all women in relation to the BRCA gene & hereditary breast & ovarian cancer. It’s a place where ordinary people help ordinary people. The difference between my project & the many others out there is that we are supporting women who have to come to terms with a very unique agonizing decision, do I have a double mastectomy & oophorectomy without a definitive cancer diagnosis?
“The term “PREVIVOR” was coined by FORCE in 2000, and they have consented to the use of “PREVIVOR” on this website.” Previvor as we use it, refers to a person who does not have cancer, but who has tested positive for the BRCA gene mutation- which puts them at an incredibly high risk of developing breast and/or ovarian cancer. This means they have up to an 87% chance of developing breast cancer in their lifetime & a 44% chance of developing ovarian cancer. Some people have found out that they have the BRCA gene mutation only after they have already developed breast/ovarian cancer- SURVIVOR. We now have to worry about issues involving passing down this mutation to our families.
We are a growing International support group & provide a site for men & women who are involved with hereditary breast & ovarian cancer, whether they are current fighters, survivors, or previvors. The site is set up to help these people get information & hear other people’s stories that have been affected by this.
This coming year our goal is to have several fundraisers to enable us to help women & their families here in our community. Since we are a small group, at this time we can only help our neighbors here on Long Island with our “services.” We plan on providing hairdressers to women post mastectomy as well as providing cooked meals & carpools to doctor’s appointments to help ease the burden & stress for the patients & their families at this difficult time.
What can you do? Participate in the forum, shop for a family, carpool children, donate meals, get gift certificates for salons, entertainment, dining, etc.. These little things mean a lot to a family going through a difficult time. Let’s stay educated about nutrition, yoga, exercise…you think of it—let’s make it happen.
We need to involve our communities… educate & make people aware & sensitive to our cause. Please show your support for all the women in your life – your mothers, sisters, daughters and friends & donate today.
If any of you would like to see a special forum, or if you hear of anything important to share, just let me know. This site is for YOU. I will continue to get us the most factual and current information that is out there, where we can all stay informed, and make the best decisions about our health, and try to deliver it in a simple and easy to understand way. I welcome all feedback and any recommendations. IF YOU HAVE ANY TROUBLE NAVIGATING THE SITE…JUST EMAIL ME. LOST PASSWORD? EMAIL ME. If you are a previvor or survivor, please feel free to tell your story in the forum, start a discussion, ask a question, or send me an email. If you have an event that you would like to publish, just let me know. If you belong to a support group–please list it for new members -also in your home state. I would like a woman or her family to be able to find support in her own community. It’s easy, just register then after you get your password, go to the forum, click on your home state and hit-add a new topic
The best part of this site is that you may remain anonymous. All you have to do is let me know you’d like to participate & I will post anonymously for you. I believe that is why this site has become so popular so fast. You don’t have to join to participate, although if I have your email address I can send you regular private updates.
Be well you all.
Wishing you all continued good health. Thanks for your support.
x0×0
Tobey
BRCA study
We have been asked to help in this study: Please participate if you can & share this. Thank you.
If you need the IRB approval for the men/women study, just email us: tobeyrdh@previvorsandsurvivors.com
Also, we’ve been told the deadline is on/about April 2012.
Her name is Jenna, and she is a research assistant at Boston College for
Professor Sharlene-Hesse Biber, Ph.D. They are currently conducting a study
on the individual experiences surrounding the BRCA gene mutation. They are
piloting a survey focusing on men who have a high risk or have undergone
genetic testing for the BRCA 1/2 gene mutation.
They would truly appreciate all feedback, both positive and negative.
This stage of their research will significantly contribute to the
understanding of men and women’s experiences with genetic risk and testing.
They will focus on the unique aspects of the male experience in comparison
to the female experience, how this impacts families, and how genetic
counseling should approach the male BRCA experience.
NATIONAL PREVIVOR DAY 2011
Today is a very special “National Previvor Day” to me, so I wanted to honor it with a blog entry.
What makes today so special besides it being the 2nd ever National Previvor Day, it is also the start of Rosh Hashanah the Jewish New Year. So, I’d like to wish everyone HEALTH, HAPPINESS, PEACE & PROSPERITY for the coming year.
We have a special announcement that we have been saving just for today in honor of National Previvor Day. As of October 1, 2011 we will be providing the services that we have been so busy fundraising for here at previvorsandsurvivors.com. If you are BRCA positive and are living on Long Island, NY and are having a mastectomy and/or oophorectomy, we will be happy to provide our group’s services to you & your family. Feel free to follow the link: http://previvorsandsurvivors.com/services/ and if you have any questions, just email me at: tobeyrdh@previvorsandsurvivors.com.
Whether or not you live on Long Island, NY we would appreciate your help in passing this information along to people you know. Copy & paste our link, put it in an email to your friends, repost it on twitter and on facebook! Having a group dedicated to spreading the word about previvors and what it’s all about can save a life. There are tests out there to check whether or not you carry the BRCA gene that makes your family so predisposed to breast or ovarian cancer and there are prophylactic measures you can take to avoid cancer. Get your annual breast and gynecological exams. You can read about it at our blog: www.previvorsandsurvivors.com & our forum has plenty of good information too: www.previvorsandsurvivors.com/forum/. That’s what National Previvor Day is all about- getting the word out and saving lives.
Last, but not least, we have a page dedicated to our supporters. You can check it out at our website. We are asking for a minimum donation of $50.00 to have your advertisement there too. We are an all volunteer group and ALL YOUR DONATION DOLLARS go to our cause. Every $300.00 donation will help us help a family here on Long Island. We take donations here: http://previvorsandsurvivors.com/donate/
Be well everyone… Happy & Healthy New Year wishes… and HAPPY PREVIVOR DAY.
Thank you Newsday & Aisha Al-Muslim for your support
Long Island Now
Cancer awareness events in Garden City
By Aisha Al-Muslim
In honor of National Previvor Day and the National Hereditary Breast & Ovarian Cancer Week, three Long Island organizations have partnered to bring awareness to the issue.
Previvorsandsurvivors.com, a support group based in Oceanside dedicated to helping men and women who have BRCA gene mutations, will be part of a discussion on Sunday, Sept. 25, from 11 a.m. to noon at the Ethical Humanist Society of Long Island (38 Old Country Rd., Garden City). Light refreshments will be served, and donations will be accepted.
The third organization, Winthrop University Hospital, will host an evening with a gynecologist/oncologist, social worker and genetic counselors to raise awareness and support for BRCA carriers. The event will be held at the hospital’s Wellness Pavilion (1300 Franklin Ave., Garden City) on Sept. 27 from 6 to 8:30 p.m. Light snacks and beverages will be provided.
The mutation of BRCA1 and BRCA2 genes has been linked to hereditary breast and ovarian cancer as well as increasing the risk of other cancers, according to the National Cancer Institute.
National Previvor Day is Sept. 28, and National Hereditary Breast & Ovarian Cancer week is observed from Sept. 25 to Oct. 2.
Thank you Newsday for your support.
Thank you Newsday & Aisha Al-Muslim for writing about our event & supporting us.
http://www.newsday.com/long-island/towns/long-island-now-1.1732330/fundraiser-to-support-those-with-gene-mutations-1.3144642
Long Island Now
Fundraiser to support those with gene mutations
1:55 PM By Aisha Al-Muslim
A new support group dedicated to helping men and women who have BRCA gene mutations is hosting a fundraiser in Lynbrook Sept. 18.
Previvorsandsurvivors.com, based in Oceanside, will host a pizza and pasta event at the Green Olive Bistro, 693 Sunrise Hwy., from 1 to 3:30 p.m. The cost is $15 per adult and $7 for children under 10.
Funds raised will help the group provide hairdressers to post-mastectomy women as well as cooked meals and carpools to doctors’ appointments.
The mutation of BRCA1 and BRCA2 genes has been linked to hereditary breast and ovarian cancer as well as increasing the risk of other cancers, according to the National Cancer Institute.
National Previvor Day is Sept. 28 and the National Hereditary Breast & Ovarian Cancer week is observed from Sept. 25 to Oct. 2.
More information is available at previvorsandsurvivors.com.
September 2011
It is Ovarian Cancer Awareness month!
previvorsandsurvivors.com wants to support all the ovarian cancer previvors and suvivors out there. If you can, please wear “teal” every Friday this month!
Symptoms of Ovarian Cancer are:
- Abdominal pressure, fullness, swelling or bloating
- Pelvic discomfort or pain
- Persistent indigestion, gas or nausea
- Changes in bowel habits, such as constipation
- Changes in bladder habits, including a frequent need to urinate
- Loss of appetite or quickly feeling full
- Increased abdominal girth or clothes fitting tighter around your waist
- A persistent lack of energy
- Low back pain
There is also a test out there called CA125. Please ask your doctor’s about it.
Be well you all……
2011 National Previvor Day & Hereditary Breast & Ovarian Cancer Week
In honor of National Hereditary Breast & Ovarian Cancer week (last week in September) & National Previvor Day (last Wednesday in September) come check out & support local events: http://previvorsandsurvivors.com/events/
We welcome your donations as well: http://previvorsandsurvivors.com/donate/
Please help us spread the word…. Thank you & be well. 
NEWS RELEASE:
Green Olive Bistro
“Italian favorites served in exciting new ways”
693 Sunrise Highway
Lynbrook NY 11563
corner of Peninsula Blvd and Sunrise Hwy in the Philips Plaza Shopping Centre 516-881-7333
Website- GreenoliveBistro.com
Joe Genova and Tony Biaca co-owners of the Green Olive Bistro are proud to be hosting the “Pizza and Pasta Event “ to benefit previvorsandsurvivors.com on September 18th, 2011 . Last winter both gentlemen lost loved ones to cancer. Joe lost his dad to multiplemyoloma and Tony lost his beloved wife to breast cancer. She carried the BRCA1 gene. Their commitment to help organizations dedicated to conquering this disease is heartfelt.
They have taken their combined experiences as owners of other facilities and created this wonderful new restaurant. The history of the name is very interesting.
For the people of the ancient world living along the Mediterranean Sea, the olive was life. That’s how vital it was to their society, culture, and economy.
Evidence shows that by as early as 3,500 B.C. they had learned the secret to curing the olive and transforming it from an inedible fruit (when picked off the vine) into a much sought-after delicacy. The olive’s other uses were exploited to their fullest by the Romans. By about 600 B.C. they had mastered olive cultivation and had an extensive and profitable land and sea trade just for olive oil. The liquid gold was used not only as a cooking product but also as a fuel, ointment, and cosmetic base. And the olive’s fragrant wood was held in equally high esteem.
Taking it’s name from this great history, The Green Olive Bistro uses fresh ingredients of the Mediterranean to present traditionally Italian favorites in an exciting new way for your enjoyment. Your hosts Giuseppe (Joe)and Antonio (Tony) with decades of experience in Long Island restaurants welcome you to our relaxed bistro and wish you buon appetito!
“Italian favorites served in exciting new ways”
Tony, Congressman Fran Becker, 6th District, and Joe at our Grand Opening
previvorsandsurvivors.com,Inc. FUNDRAISER for Long Island,NY Community
