Metavivor needs Volunteers

Hi Everyone! Metavivor is having a Nationwide call for Volunteers!

MAJOR EVENT TO BRING ATTENTION TO THE NEEDS OF THE METASTATIC BREAST CANCER COMMUNITY. BECAUSE. IT’S TIME….

 

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METAvivor Awareness Campaign 2014

Sea to Sea for MBC

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Metavivor is now accepting applications for volunteers! Even if you can only spare some small time to volunteer Metavivor needs you! No deed is too big or too small. If you care about Metastatic Breast Cancer, this is worth your time to help.

Event Overview: On February 1, 2014 breast cancer widower Marine Corps LtCol Joseph Fagan will depart San Diego CA, arriving in New York City on Father’s Day weekend. Along the way Joe will meet with researchers, including METAvivor grant recipients, dedicated to improving the lives of metastatic patients.

Joe’s involvement is very personal. In 2010, his wife Lainie Fagan was 29 years old and pregnant with their first child. At 34 weeks she was told her cancer had metastasized and that their child would need to be delivered early so that she could begin treatment. JJ was born October 1, 2010, but tragically it was too late for Lainie; Joe and JJ lost their beloved wife and mother only nine months later. Joe is passionate and determined to do his part so that others can be spared such a devastating loss.

Intent of Event – Awareness and Fundraising: Over 122 days Joe will run 3,845 miles, transiting twelve states and meeting with metastasis researchers, metastatic patients and family members. Public speaking engagements at various locations and the filming of his journey for purpose of a documentary will bring significant attention to metastatic breast cancer and give voice to a patient community that is seldom heard. A coinciding fundraising campaign will bring in valuable dollars to help fund METAvivor’s 2014 research grant cycle, estimated at $320,000.

VolunteersNeededOpportunities for Volunteers: To maximize the effectiveness of the awareness and fundraising campaigns, Metavivor will need volunteers nationwide in many different capacities.

Those wishing to volunteer should send an email with their name, email address and phone number to the volunteer coordinator: dewaynewilcher@yahoo.com.

Note: Committees are being formed now.

Sponsorship* Logistics* Volunteers* Media Advertisement*
Donations in Kind Route Organization Orientation Advertising
Major Sponsors Transportation RV Organizational Coordinators Photography
Donors Transportation Flights Regional Coordinators Documentary
Merchandising Run Team Coordinator Local Volunteer Coordinators Ceremonial Start San Diego
Lodging Volunteer Hours Cataloger Ceremonial Celebration NYC
Meal Coordination Research Center Stops
Project Light Up Social Media
Running Gear Homecoming Annapolis

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You can also help by going to Metavivor’s Facebook page for this event and click “like”, while the page is still under construction. Go to: https://www.facebook.com/pages/Sea-To-Sea-for-MBC/223255354499874

twitter_bird_logoFollow on twitter so you will see the very first tweet!  @C2C4MBC is the official twitter account for this event.

Note from CJ-one of the co-founders of METAvivor:

One quick clarification. The Ambassador Program was launched in 2013 as part of METAvivor’s long-planned national expansion program. It is completely independent of Sea to Sea for MBC, although many volunteers with the Ambassador Program are volunteering to help with the Run as well. The Run is an exciting venture that will occur in 2014. The Ambassador Program is a permanent part of METAvivor and is run by METAvivor Board Member, Lori Marx-Rubiner. Volunteering for either program does not automatically volunteer you for the other. Those wishing to volunteer for the Ambassador program should contact the Director of that program, Lori Marx-Rubiner at regrounding@yahoo.com. Thanks!

“METavivor on the Move” – I am on the team

pinkelephantI have written about my passion (see: While Flying – Frustration surrounds Me ) for doing  everything I can to advocate for Metastatic Breast Cancer (MBC). 6-10% of breast cancer patients are initially diagnosed at Stage IV (MBC). 30% of all breast cancer patients initially diagnosed with early stage breast cancer will eventually metastasize (or have what some of us call mets). 

In the US alone 1 woman dies every 14 minutes of MBC. I have many friends now who have MBC. Metavivor is an organization that I have great respect for. Like Advocates 4 Breast Cancer they are an all-volunteer, patient-founded organization. They are devoted to raising awareness about metastatic breast cancer, funding vital MBC research and they promote the concept that 30% of every organization’s breast cancer research funds should be devoted to MBC research.

Right now only 2% of all funds for breast cancer organizations go to MBC research. This has to change. As the Executive Director of Advocates 4 Breast Cancer (A4BC), I am proud that our organization is listening to Metavivor. We are devoting 30% of our funds each year to MBC research. We hope that other non-profits will follow our example and recognize how important it is for all breast cancer organizations to fund MBC.

finalAs an update to A4BC, we are in the process of getting our official site up and we are working around the clock to have it done. We are now on Facebook.  Thank you everyone for liking the page and if you haven’t seen it, please have a look and “like” the page to stay updated. Please click on: https://www.facebook.com/advocates4breastcancer.

I am haunted by the death of my very good friend Li Bailey, and my other friends who have died from MBC. Unfortunately this list keeps growing. I also hate that many of my friends have recently become part of the 30% joining my other friends who have MBC. This disease robs so many of so much. We must have MBC research that continues to bring about “quality of life” medications that will extend everyone’s lives for years (not just weeks or months). Forty thousand women in the US alone will die from MBC this year.

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Metavivor is also looking for volunteers. They have a fantastic campaign called “Metavivor on the Move.”, inviting people to join the volunteer team. They are establishing 10 regional teams, with representatives from every state, plus volunteers in Canada. Although I have a very full plate, I am part of the volunteer team doing what I can to help with Metavivor.  If you would like to volunteer to help in any capacity of your choosing, send an email to CJ@METAvivor.org

To learn more about MBC please check out Nancy’s Point at: http://nancyspoint.com/mets/

To learn more about METAvivor, please visit their website here: www.metavivor.org.

 

Dr. Susan Love is Back in Action

Below is the statement from Dr. Susan Love about her returning after going through treatment for leukemia. I was very excited that on January 10th, because I am a volunteer, I joined Dr. Susan Love and the Community Engagement Team at the Dr. Susan Love Research Foundation for an interactive, informative webinar to learn more about the Foundation, its signature Army of Women Program, and mobilizing the community to help create a future without breast cancer!

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For me it was so exciting to hear her voice . I am so used to her being at so many breast cancer events and I missed her. I was also pleased that when I asked her “Although I am very excited about the deadline to end breast cancer in 2020, what is being done to help the metastatic community now?” She expressed that it was an important question and went in to some details about advances being made in the metastatic setting especially in relation to molecular profiling and understanding why it occurs. There is still so much work to do especially when it comes to metastatic breast cancer.

If you don’t know about Dr. Susan Love’s Foundation please click on the links below to learn more. You don’t have to have had breast cancer to join. In fact many of the studies are for women who have not had breast cancer, so please take a look and see if you can join to help!
LINKS FOR INFORMATION:
Dr. Susan Love’s statement about her return:

Back in Action

By On Wednesday, January 16, 2013 · 70 Comments

First of all I want to announce, fanfare please, that I am back to work at the Foundation!  I am feeling stronger every day with my new bone marrow and very short hair.  If I were to encapsulate in one word what my recent experience with leukemia has inspired, I would have to say impatience. I have talked for years about the collateral damage that patients experience from cancer treatments and now I know them first hand.  They are not acceptable!

While we all want a cure, we have to focus collectively on finding the cause!  I have come back to work with new energy focused on research strategies going forward that can have an immediate impact on women’s lives and move  us closer to finding the cause and true prevention! I told you I was impatient!  Stay tuned, as we will need all of you in the Army of Women and Health of Women Study (HOW) study to participate as we move forward!

Help_Button_4678245While out on leave, my team at the Foundation has been steadfast in their efforts to introduce our innovative research projects.  We launched our Bacterial and Viral Diversity Study in collaboration with Delphine Lee MD at the John Wayne Cancer Institute this November. This is a very exciting exploratory study to see if a virus or bacteria could cause breast cancer.  We have already begun out sample collections at the Foundation.  We are collecting fluid from the ducts of Army of Women volunteers and  characterizing all of the non-human DNA we can find.  Then, we will match it to known viruses and bacteria and see who is there!  This is the first step to determine whether breast cancer could be caused by a virus or bacteria.  I’m thrilled to be back doing research and to have this exciting project underway.  Updates to come!

How Breast Cancer Has Changed My Life

breast-cancer-treatingWhen I got breast cancer I thought I would go through my treatment, get cured and go back to my normal life.  My primary treatment with breast cancer happened in 2005 consisting of a lumpectomy, chemotherapy and radiation. In February 2007, my doctors found a local recurrence caught early, yet it kept my breast cancer with me because  I ended up having so many breast surgeries. I started having a bilateral mastectomy with tissue expanders to implants, and I am still going through completing my reconstruction because of many complications due to my radiated breast.

The truth of the matter is my life changed completely. I left Los Angeles and went to live in Tennessee after my recurrence so I could be closer to my family, only to have my father die of pancreatic cancer and my brother get sick and die of esophageal cancer. Luckily I have my mom, my sister, my nieces and nephews, plus awesome friends.

volunteerimagesWhile in Tennessee I volunteered at the Vanderbilt Ingram Cancer Center in the chemotherapy infusion center to try to help others going through chemotherapy. I also volunteered with the American Cancer Society at the Hope Lodge where people too far away from the hospitals in Nashville stayed for free at a beautiful Lodge with other cancer patients, so they could get treatment for cancer.

I returned to live in Los Angeles after my brother died and his family left Nashville, where my best friend Lila was starting to show signs that her breast cancer was progressing rapidly. She died five months later. People have told me I have intuitive instincts about where to live. I have been fortunate to end up living where I am needed the most.

The biggest change within me is that I find small problems not worth fixating on since life is too short and important. I try to live each day to the fullest since I realize now that we will never know when it will be our time. I am grateful that I lived through my treatment and that now I can believe I am cancer free, but one never really knows. In the back of my mind I am always wondering whether it will come back, perhaps because I have so many friends who are in that situation.

I feel devoted to breast cancer issues as well as my breast cancer advocacy. I surround myself with mostly other survivors because I feel most connected with them. I also joined a support group which used to have eight women till  Lila died from breast cancer and now we are seven. We meet once a month at one of the members houses depending upon who hosts for the month.

As a result of this horrible disease, I have met so many interesting people who have enriched my life in so many ways. I have to accept that I am right where I belong, and I have this wonderful opportunity with my non-profit company to help the lives of people affected by breast cancer.

For more information about my non-profit company “Advocates for Breast Cancer”, read “About Us”.