finding hope beyond the pink ribbons (by Laurie)

July 20, 2012

My friend Sean Moore, Orit’s husband, posted the following note on FB. I reprint it here with his permission:

An enormous number of people have asked about donations in Orit’s name over the past 2 weeks. As many of you know, Orit was very academically minded and spent considerable time reading the medical literature and evaluating charities. We found that most cancer research charities had very high administration fees and poor impact factors. We came across some specific research, which has very good promise in helping find a cure. The Ottawa Hospital Foundation has set up a fund, which will be used 100% to go directly to this work. The discovery is very novel and was published in the world’s most prestigious scientific journal in June of this year. I will include a link to their latest publication and an easy to understand explanation:

http://www.fbmc.fcen.uba.ar/materias/qbiia/seminarios-2012/seminario-6-28-y-30-de-mayo.-hipoxia-y-autofagia/A-Nature%2012%20AOP%20may6.pdf

Here is a link to an easy to understand summary of the research:

http://www.ottawacitizen.com/health/discovery+offers+hope+cancer+heart+disease+miracle+drugs+with+video/6574966/story.html

Donations in Orit’s name can be made online by using the following link:

https://secure.e2rm.com/registrant/donate.aspx?TributeType=Memoriam&EventID=1819&LangPref=en-CA&Referrer=http%3A%2F%2Fohfoundation.ca%2F

The first page will capture the information regarding the person making the donation. Under “Donation Information”, please choose “Other” in the drop down menu and specify “As requested by family” in the space provided. Once the donation portion is completed, you’ll be directed to a page to indicate that the donation is being made in memory of Orit and to indicate if an acknowledgement should be sent. Tax receipts are immediately available after donation is done.

Donations can be sent by mail (indicate in memory of Orit Fruchtman) to
The Ottawa Hospital Foundation, 737 Parkdale Ave, 1st Floor, Ottawa, ON K1Y1J8.

Donations can also be taken by phone by calling (613) 761-4295.

1 in 8 women will get breast cancer. Research is the only path to finding better treatments and a cure to this disease, which has devastated our family and so many others across the world.

Love, Sean

“The true meaning of life is to plant trees, under whose shade you do not expect to sit.”  Nelson Henderson

This message had a very strong impact on me. Orit was a very smart woman. Sean is a doctor. I trust their judgement. And I agree with their priorities. 

Let’s do something great to honour a wonderful woman. Let’s help fund research that will effect real change. I donated. Will you?

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Marathon for IBC Research

April 20, 2012

I’ve made a decision.  One decision in the right direction.  I’ve been saying for the past year I would do a marathon for my 5 year cancerversary…..and I’m quite certain I can achieve this goal now that I have run 4 half-marathons.  But I needed to decide two things.  I’ve made at least once of those decisions.

I’ve decided where the money should go.

Some of you might remember I was treated here in Kalamazoo, Michigan at the wonderful West Michigan Cancer Center, but I also went over to the University of Michigan every few months during treatment to concur with an oncologist over there who deals more specifically with Inflammatory Breast Cancer.  Over the past few years I have occasionally looked online to see what research she has been doing.  I knew she traveled often to Tunisia because the rate of IBC is so high over there.

So I contacted her a few days ago to see if I could help support her research.  And one thing I really wanted to know was that she would get the money for her team and it wouldn’t get swallowed in all the bureaucracy of a big university.  I figure I lived through this horrible disease and I’m going to run my booty off to try to raise as much money as I can so another mother doesn’t have to die from this disease….I want to be sure I know where the money goes.

She said that U of M has allowed her to keep ALL the money she raises for her research…..and this is a significant honor because this doesn’t always happen.  That’s how much they believe in her research.

So I’m very excited to have one decision made.

Now to figure out which marathon I want to run.  I’m shooting for November or December.  I really wanted to run near February 4th when I was diagnosed, but I think preparing for a marathon in January with my longest runs would be really hard, so then I was thinking about running the Las Vegas Rock-n-Roll on December 2…..because that would be my birthday!  But the reviews are HORRIBLE!  Worst reviews I’ve ever read.  Do I dare run it in 2013 in the hopes they will get some of the kinks worked out?

Advice from marathoners would be good.

Here’s a link to this great research and Dr. Merajver’s team!


Little Pink Houses of Hope Video (by Judy)

October 31, 2011

This? Made me cry. I miss my Little Pink family SO MUCH.

Please watch and consider donating. It’s a wonderful organization.
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Cross-posted to Just Enjoy Him.


Featured Charity: Making Memories Breast Cancer Foundation (by Judy)

October 27, 2011

Making Memories Breast Cancer Foundation is exactly that: an organization that makes memories, wishes for those who have metastatic breast cancer, and, depending on the wish, their families.

Their mission is:

To provide an opportunity for metastatic breast cancer patients’ dream or wish to be fulfilled by providing a special time of ‘Making Memories’ together with their families, a chance that might not have become a reality without the assistance of the Making Memories Breast Cancer Foundation.

To advance the awareness of breast cancer and to educate the public about the vast resources and support available to breast cancer patients and their families.

Recognizing the huge financial strain placed on families wherein a member has metastatic breast cancer, Making Memories provides a way for metastatic breast cancer patients to make wishes come true, whether they’re in the form of a trip with their famly, a way to bring family to their bedside, or grants for publishing memoirs or other endeavors.

Making Memories hosts events and promotions as fundraisers. In addition, their website is a source of information about subjects including breast cancer facts and FAQs. Naking Memories currently has a list of wishes from people who have applied to Making Memories.

I think organizations like Making Memories are vitally important to metastatic breast cancer patients who find their finances depleted from cancer treatment and wish to make memories for themselves and their families. I plan to financially support Making Memories somemtime during the coming year. I hope you’ll join me in doing so as well.

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Cross-posted to .Just Enjoy Him


Featured Charity: METAvivor Research & Support, Inc. (by Judy)

October 25, 2011

You may be wondering what a METAvivor is. I didn’t know the word until I started writing about breast cancer grassroots organizations and ran across METAvivor. METAVivor provides a definition of the word:

A person living with a metastasis. It combines “vivor” (from “survivor”) with “meta” (from “metastasis”).

From this, I found out that I’m a METAvivor. I have to say, I like that word. Because my cancer has always been stage 4 (it metastasized to the liver) and it’s incurable, the word “survivor” didn’t seem to quite fit, but I don’t like describing myself as a “breast cancer patient” either just because I’m much more than that. And I hate the word “victim” because I am in no way a victim. I live with this disease as well as I can, and if I do say so myself, I think most of the time I live quite well with it.

But enough of that. Let’s talk about METAvivor Research & Support, Inc. This is a grassroots organization that is staffed fully by volunteers. It’s describes itself as:

a 501(c)(3) non-profit organization run entirely by volunteers, mostly with MBC. We created METAvivor because we believe the following:

•Support for MBC patients is greatly lacking
•Awareness of the disease is appalling low
•BC mets research is horrendously under-funded

and its mission is:

•We offer local support
•We help people elsewhere establish support programs
•We seek out speaking engagements, media opportunities, and other venues to make our voices heard
•We award a MBC research grant every year

METAvivor now has an initiative that is called “30% for 30% Campaign.” This campaign’s goal is to get metastatic cancer research funded at the level that metastatic breast cancer occurs.

On October 10th, METAvivor Research and Support launched its 30% for 30% Campaign in a concerted effort to improve longevity and quality of life for persons with metastatic breast cancer (MBC). The concept is simple: Since thirty percent of all breast cancer patients develop MBC — a fatal condition, then 30% of breast cancer research funds and 30% of breast cancer support activities should be dedicated to MBC. At present, only 2% of breast cancer research funds go toward MBC research and support for the disease is rare.

Of course, as a METAvivor who is greatly upset at the lack of funding for metastatic breast cancer, I fully support this effort. I hope you will too, and will consider donating money to METAvivor . . . instead of buying more pink stuff.

I’m just sayin’.

Good work, METAvivor!
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Cross-posted to Just Enjoy Him.


Featured Charity: Living Beyond Breast Cancer (by Judy)

October 24, 2011

Living Beyond Breast Cancer (LBBC):

empowers all women affected by breast cancer to live as long as possible with the best quality of life.

LBBC hosts seminars and conferences for women with breast cancer. In addition, it has an extensive website with subjects covered such as: Understanding Breast Cancer; Learning From Others; Events; Get Involved; and, About LBBC. There is also information about those who are newly diagnosed, those with metastatic breast cancer, African Americans with breast cancer, and Latinas with breast cancer.

Living Beyond Breast Cancer offers programs and services to women affected by breast cancer, caregivers and healthcare providers including a website, lbbc.org; a toll-free Survivors’ Helpline staffed by trained volunteers at (888) 753-LBBC (5222); national 84 cents of every dollar donated is used for programs and support servicesteleconferences; community programs; newsletters and publications; recordings and transcripts; small grants to help improve quality of life; and workshops and trainings for healthcare professionals

One thing I like about LBBC is that they tell you upfront that:

84 cents of every dollar donated is used for programs and services.

Please consider donating even a small amount to LBBC to help those of us trying to Live Beyond Breast Cancer.
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Cross-posted to Just Enjoy Him.


Featured Charity: Inflammatory Breast Cancer Research Foundation (by Judy)

October 17, 2011

The Inflammatory Breast Cancer Research Foundation, founded in 1999, has its focus succinctly stated on its web page:

The IBC Research Foundation is dedicated to researching the cause of Inflammatory Breast Cancer, also known as IBC, an advanced and accelerated form of breast cancer usually not detected by mammograms or ultrasounds. Inflammatory breast cancer requires immediate aggressive treatment with chemotherapy prior to surgery and is treated differently than more common types of breast cancer.

The IBC Research Foundation has been integral in my not feeling so alone in my disease. It has a Facebook page and its website is full of great information about IBC and the research efforts of the Foundation. Sections on the website include: IBC 21st Century Research; Awareness; Photos of IBC; and, Donations and Fundraising. One of the impressive things about The IBC Research Foundation is that, like some other grassroots organizations, the bulk of its fundraising efforts go towards researching IBC.

The IBC Research Foundation conducts its business and pursues its mission and goals in the latest 21st Century cyber fashion with no real estate, no building space with high rents, and with volunteers all over the country working out of their home on their own computers. We use the Internet to increase the awareness of IBC and its symptoms through our website. We use e-mail lists to connect the geographically wide-spread group of volunteers pursuing the mission and goals of the Foundation. Those same volunteers distribute many thousands of brochures throughout North America each year. We provide a nationwide toll-free telephone number (1-877-stop-IBC or 1-877-786-7422) for those seeking a direct connection with a human being or who have no internet access. We also attend many cancer conferences, mini-conferences, and symposiums each year to remain current with research and researchers, introducing many of them to the most aggressive breast cancer, IBC, while encouraging these researchers to include IBC biospecimen samples and/or patients in their research.

The IBC Research Foundation has been an invaluable resource for me. Consider donating to them instead of purchasing another pink item. As before, any amount will help their efforts. I strongly support this organization.

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Cross-posted to Just Enjoy Him.