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.
Will you be changing your drinking habits?
The American Medical Association today reported that 100,000 women were followed in a study over 28 years and the conclusion is that having less than one drink a day (even a glass of wine) could increase your risk of breast cancer.
Three to six glasses of alcohol/week increases your risk of breast cancer by 15% and two glasses/day increases your risk to 51%.
It was further reported that 11% of breast cancer is related to alcohol consumption because alcohol increases levels of estrogen which fuels tumor creation and growth.
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 EASTMEADOWPATCH & Michael Ganci
Greatest Person: Sharon Stanley Teaches by Example
Despite undergoing multiple surgeries due to having the BRCA1 gene, she spends her time educating young people.
- By Michael Ganci
- September 14, 2011
Not even multiple surgeries could slow Sharon Stanley down.
Stanley, 53, and a Westbury resident whose son attends W.T. Clarke Middle School, has the BRCA1 gene, which gives women a higher than normal chance of having breast cancer.
After losing both her mother and grandmother to ovarian cancer, being tested was a "no-brainer."
"When my mother was dying, she told me to have my babies and then get tested," Stanley said.
Sure enough, doctors found the gene, which led to Stanley getting her ovaries removed in 2003. That wasn't all, though, as doctors found something on a mammogram in 2008. The doctor referred her to a surgeon, who recommended a bi-lateral mastectomy with reconstruction.
"I was blown away," Stanley said. "Suddenly my odds of getting breast cancer went from 30 percent to 60-80 percent. Normal women only have a 12 percent chance of getting breast cancer."
In June of 2009, Stanley had the initial procedure to have her breasts removed. Expanders were put in. Then, in October, Stanley had a second surgery to put in silicone implants.
"I don't regret having the surgery," Stanley said. "I regret that I had to have it."
Stanley says that she was often in pain throughout the process and several months after, but she found support groups that helped her get through the process. One such group, previvorsandsurvivors.com, is based on Long Island, and Stanley is now the second vice president.
Stanley works as an elementary school teacher in Queens. She helps children with learning disabilities and language difficulties "function in the regular education classroom setting."
Stanley's son is involved in the music programs at Clarke Middle School, and she's proud to be in the East Meadow School District.
"When my husband and I were researching school districts, we were looking at reading and mathematics scores," Stanley said. "It never occurred to us to investigate music programs! We feel like we lucked out in this district."
Stanley, who admits she loves Eisenhower Park, and especially the Carltun, says there is one way you know you're from East Meadow.
"You no longer can eat chicken from Boston Market or any other place," she said. "Now we have Zorns!"
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……
-tax deductible donation-to benefit our Long Island NY BRCA, Breast Cancer, Ovarian Cancer Community
Send a gift of charity. UNITED STATES ONLY AT THIS TIME.
The cards fold in half to: 8 1/2 x 5 1/2 The in honor of / in memory of picture is on the outside of the card- your information as to the honor of/memory of shown below is on the inside of the card.
We are offering the two following cards for a minimum donation of $10.00 per card. If you would like to purchase either of the cards please follow the donation link to pay:
http://previvorsandsurvivors.com/donate/
then:
Please email: tobeyrdh@previvorsandsurvivors.com
with the following information.
please copy & paste this:
IN MEMORY CARD:
Your name:
Your address:
Your email:
IN MEMORY OF: (exactly how you want name to appear)
Address to send card to:
————————————————————————————-
IN HONOR CARD:
Your name:
Your address:
Your email:
IN HONOR OF: (exactly how you want name to appear)
Type of Honor: (birthday, anniversary, graduation, etc.)
Address to send card to:
