In hindsight, the summer of 2004 was odd in that our 16 year old son declined some opportunities to wake board. More comments during goalie camp towards the end of the summer . . . but aches and pains were fairly normal in a guy who had always been an avid athlete. Strange that he found it difficult to do some of his classic goalie moves, though his saves were still pretty incredible . . . . and so the journey began . . . a trip to the family doc in August 2004 . . .

. . . fast forward to December 2004 . . . when to our horror . . . we were told our son had a type of very aggressive cancer called Ewing’s Sarcoma.

FACTS:

What is Sarcoma?

● Sarcoma is a cancer of the connective tissues such as nerves, muscles, cartilage, joints, bone or blood vessels.

● There are about 50 subtypes of sarcoma including Ewing’s sarcoma.

● It can appear anywhere on the body and affects young, old, and people in every country of the world "Sarcoma knows no borders".

How many people have sarcoma?

● About 1% of adult cancers are sarcomas.

● 15 – 20% of all children’s cancers are sarcomas.

● There are hundreds of thousands of people and their families affected worldwide.

 What is the treatment for sarcomas?

● Chemotherapy, combined with surgery to remove the tumour if possible and/or radiation.

Why are sarcomas dangerous?

● They are often misdiagnosed. Sometimes they are thought to be sports injuries.

● Sarcomas are often very aggressive and fast growing cancers and when they are diagnosed have often grown very large and spread to other parts of the body (metastasized).

● Many resist treatments that are currently used.

What is needed?

● Research is desperately needed to investigate the cause, prevention, early diagnoses and targeted therapies for sarcoma and other cancers that will not devastate child and adolescent bodies.

What are we doing? 

● We are excited this year to be representing Canada in the core group of the Team Sarcoma 2008 Initiative organized by the Liddy Shriver Sarcoma Initiative.  On July 12th, the participants forming 2008 Team Sarcoma will meet in Passau, Germany, to begin a bike tour along the Danube River that will take us into Vienna, Austria, on July 19th. Fifty cyclists from many different countries including sarcoma patients, caregivers, physicians, friends, families, and those concerned about sarcoma will participate on this bike tour as "Sarcoma Knows No Borders".  The 2008 Team Sarcoma Bike Tour is part of an internationally coordinated set of events called the  2008 Team Sarcoma Initiative http://www.sarcomahelp.net/index.htm.  While the core team is biking along the Danube thousands of people worldwide will be showing their support in what has become an "International Sarcoma Awareness Week." People are in the process of planning Team Sarcoma events in various countries to be part of the 2008 Initiative.  One group from eastern Canada was involved in 2007 - we hope that we can encourage more Canadians to participate this year to contribute to this international effort.

What can you do?

1. Help to increase awareness about childhood and adolescent cancers such as sarcomas.

   Sarcoma is considered to be "the forgotten cancer"  – though 15-20% of all childhood cancers are sarcomas,  there is comparatively little research done on sarcomas or adolescent and young adult cancers compared to  some of the more well known cancers.

   a) View the video "The Forgotten Cancer" at http://www.sarcomahelp.org/Initiatives/TS%202007/forgotten.htm

   b) Pass the link on to your friends and family so they will learn about sarcoma.

    

2. Support the enrolment of children, adolescents and young adults in cancer related clinical trials as statistics show that the outlook is often better for those given the opportunity to participate in clinical trials.

3. Understand that when a child or adolescent survives cancer, the impact on both the affected and their families goes on both physically and psychologically for many years.

               The cancer diagnosis and treatment are only the beginning . . .

               It is estimated that there is an average 70 years of life lost for any child who does not survive

               their disease compared to an average of 9 years of life lost for an adult cancer.  For those

               who survive this means many more years of suffering the after effects of treatment.

4.  Form a "Team Sarcoma" where you are . . .

    

   JOIN The Edmonton Team Sarcoma 'S' is for SARCOMA Challenge

    on one or more of the days from July 12 to 20 that the members of the 'core' team are biking along the Danube to help make hundreds of thousands of people aware of this devastating and often deadly cancer. 

    To find out how to officially register your participation click here. 

    

   Go to  http://www.sarcomahelp.net/index.htm to get more information on planning your own “Team Sarcoma”.

   Remember this can be as small or as large as you want it to be -wouldn’t it be great if ordinary people could bridge the gap and increase awareness to thousands more around the world about the need for more knowledge in dealing with childhood cancer  including sarcoma, including prevention, early detection, less toxic treatments, and dealing with the devastating aftermath of current treatments? 

    

5. →Sponsor a Team Sarcoma or make a donation to the Kids with Cancer Society or the Liddy Shriver Initiative:

   i)  "The Kids with Cancer Society"

   Although it is not a requirement of participation - you can encourage family, friends, schools or businesses in your area to support your efforts by sponsoring you with a tax deductible donation to The Kids with Cancer Society, Research Chair, Team Sarcoma. 

   Donation to the Kids with Cancer Society will support the development of a research endowment chair in pediatric oncology in partnership with the Facility of Medicine and Dentistry at the University of Alberta.  "The research endowment chair will facilitate the recruitment of new talent and skills into the area of childhood cancer, an area that is currently extremely underrepresented". 

   Mail in cheques directly, pay on line or over the phone by credit card.

    

   Make out your cheque to:  Kids with Cancer Society   Please reference: : Research Chair, Team Sarcoma.

    

   Mail to:

   Kids with Cancer Society

   #307 College Plaza,

   8215 - 112 Street,

   Edmonton, Alberta, Canada T6G 2C8

          http://www.kidswithcancer.ca/donation.shtml  and click on Donate Now -Canadahelp.org

          Note:  Administrative costs of The Kids with Cancer Society are 6% with another 2% on fundraising costs - very much lower than 'industry'  

          standards.  They do not participate in telemarketing activities or the use of external fundraising organizations. 

     ii)  Donate directly to the Liddy Shriver Sarcoma Initiative:     

           Mail in cheques directly or pay on line at http://sarcomahelp.net/contributions.htm   

           Please reference Team Sarcoma 2008 Edmonton when you make your donation. 

Liddy Shriver Sarcoma Initiative       

17 Bethea Drive

Ossining, NY 10562-1620

Phone: 914.762.3251, Fax: 914.941.9181
email info@liddyshriversarcomainitiative.org

The Liddy Shriver Sarcoma Initiative (LSS) is run completely by volunteers so 97% of your donation will go directly to sarcoma research and you may specify where you want your donation to be directed (example - sarcoma of adolescent and young adults or Ewing sarcoma). The Liddy Shriver Sarcoma Initiative will match all donations with funds from other sarcoma-specific research foundations.   Click here to find out more about research funded by the Liddy Shriver Sarcoma Initiative.

We are hopeful that a Canadian researcher can be the recipient of joint funds from this initiative in the near future.

100% of the money raised will go towards childhood and adolescent cancer & sarcoma research.

Sincere thanks for your support,

Bjarne, Elaine & Taylor Pedersen

epeders@shaw.ca

  The Team Sarcoma 2008 Canada logo was created to represent the many places where sarcoma can appear in the body . . . invading connective tissues such as bone, tendons, muscles, nerves, blood vessels and other cells.  An analogy is made as to how sarcoma infiltrates our world population affecting people of various ages, ethnicities, geographic locations, social and economic circumstances . . . as the Liddy Shriver Initiative so aptly describes ... SARCOMA KNOWS NO BORDERS!.