Last updated on March 13, 2008

BeatSarcoma is a volunteer initiative, launched in 2007 by a sarcoma patient, to help increase awareness about sarcomas, raise funds for research and assist with survivorship issues.

Description:
Our mission is to raise funds for sarcoma-specific research and to support anyone who is dealing with sarcoma. We work directly with clinicians and researchers to identify un-funded high priority and high impact programs relevant to sarcoma.

• 20% of childhood cancers are sarcomas. They affect also many young adults. Sarcoma destroys so many lives before they have had time to blossom.
  
  
• Sarcoma gets less than 1% of cancer research funds - this is not enough. Sarcoma research is years behind compared to that for other cancers.
  
  
• 100% of money raised by BeatSarcoma goes to research or patient programs.
  
  

What makes us unique:

• Lean organization: Currently 100% of funds raised support sarcoma-related programs.
  
  
• Transparency: BeatSarcoma publishes all relevant information ranging from project currently being funded to financial statements through research results and achievements.
  
  
• Focus: In order to reach efficiencies of scale and a greater impact, BeatSarcoma is focused on sarcoma-related issues.
  
  
• Global coverage: Sarcoma recognizes no border and BeatSarcoma works across all of them. We have volunteers in many countries and support patients and programs around the world.
  
  
• Relevance: BeatSarcoma works closely with researchers at leading institutions around the world to identify high impact projects. We will be funding what we believe are the most promising and far-reaching programs, regardless of where it is hosted.



History:
After a couple of sudden inexplicable acute asthma attacks leaving me with 50% of my lung capacity for a while and a Advair drug addict for life; after a trip to England on an aircraft that caught fire; after a diagnosis of Post-Traumatic Stress Disorder which I have been battling for years with the help of anti-depressants and therapists; after a collision mid-Pacific with a descendant of Moby Dick that sunk the boat I was on and a couple of freezing encounters with Patagonian glaciers and ice cap, I was really looking forward to a nice and quiet year of work.

Until I got a call from my OB/GYN -
"I have found some kind of tumor on your cervix. I have never seen this before. Hopefully, the pathology lab will know."
The pathology lab did not know, and five nationally-renowned pathology labs later, I received seven different diagnosis, all pointing at a different type of soft-tissue sarcoma. And, they could all have been right.

This poses a problem as oncologists rely heavily on pathology reports to make treatment recommendations. After consulting with 17 oncologists in the US, UK and France, I received eight different recommended treatment plans. And they could all have been right.
They ranged from some that I liked a lot because they would preserve my fertility - well, for a little while longer - to some that frankly sucked because they would render me sterile immediately. No one could quantify their risk given our current understanding of the disease. I had to make important life decisions with little to no data. Since my disease had no name and turned out to be unique, I called it "Alien".

Oncologists were telling me "Don't gamble with your life, this may be your only shot at survival. Relapsed sarcoma has no known cure today." and I opted for the most aggressive treatment, renouncing forever to pregnancy. I went through two IVF cycles in-between surgeries to freeze some embryos and ovarian tissue. My hopes as a mother are now all concentrated in a small tank full of liquid nitrogen.

How did that make me feel? -
The physical aspect of this little battle was the easy part. Yes, I have had more pelvic exams in the past 6 months than in the past 15 years, rectal exams are unpleasant; yes, the successive treatments were painful and made me feel sick and tired and yes, and the hormones from the IVF cycle drove me up the wall. The hardest part of my journey is way beyond that. Our bodies have an amazing ability to re-bounce despite their inherent fragility. What hurts the most is anything that throws your mind in disarray, that confuses you, that blurs the line between good and evil. Anything that sends you running around crying 'why me' - anything that burns the minute you caress the subject with hesitant thoughts. Especially when you lose something you thought would be yours forever, just because you were born with it.

I want to live, I want to get back to sailing and sports, get back to work, get back to Improv and writing. I want to travel, jump, run, feel mad and go fast.

I also feel deeply sad. I may have buried Alien but I will never feel a child growing in my womb. I will most probably not have a biological child with a future husband. I have lost something that meant the world to me. Anything that reminds me of motherhood and babies is excruciatingly painful right now.

My journey will be complete when I have accepted my loss, learned to focus on what I have gained and when I have moved from assisted to giver. An entire community supported me. I need to feel re-instated as an active citizen of this little family.

What's next? -
Alien made sure that I'd always remember. He left me a red-ish irregular scar at the bottom of my abdomen. It runs from side to side and looks like a big smile.

The first time I faced it, I thought I'd be afraid. Instead, I was curious. I followed the contour of the scar with a light finger, wincing when I would put a little too much pressure. I cried over that smile that may never fade - but soon I couldn't resist and my mouth took the shape of this little souvenir.

Slowly, a most unexpected feeling crept up. I felt satisfied. This is me now with a smiley face forever drawn on my skin, reminding the world of how incongruous life can be. I tried to imagine the ugly spiky face of Alien, drooling with acid and getting comfy in my belly. I couldn't grab hold of this idea for very long. It was replaced by this soft and tender smile, looking happily at the existence that lies ahead of me.

My battle with Alien and its cousins is not over. I want to raise a medical army so no one ever has to go through the same ordeal. I am building BeatSarcoma, our battleship.

The idea of a family might come back in other forms. Or maybe, this idea will go away. I don't know yet. After I get healthy again, new options will pop up. I don't get to pick the cards I am dealt with but I can still decide how I want to play that hand. God must have had something in mind that I don't yet comprehend. I trust that I will in due time. At least, I chose to find out.

Please, help me get BeatSarcoma to its destination so that no other patient, particularly children and young adults, faces the uncertainties of sarcoma diagnosis, the frustrations of limited treatment options and the high risk of relapse and poor outcome.

Thank you.

Nathalie Criou
Founder of BeatSarcoma



Contact person: Nathalie Criou, (email)
Main office number: (415) 651-4473

Address:


143 28th Street Suite 4 San Francisco, CA 94131 (See a map)


Web Site: http://www.beatsarcoma.org

Miscellaneous Information

Besides English, which languages are spoken at your agency?
	French, Spanish
What is the minimum age for volunteers at your agency?
	16
Is your agency wheelchair accessible?
	No
Does your agency have the capacity to host groups of more than 10?
	Yes
Does your agency have the capacity to host groups of more than 20?
	Yes

---

Be the first person to offer feedback on this agency!
Post a user reflection to share your experiences with other users!