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November 13, 2004. Our Humble Beginnings Wendy Sommers - The Sarcoma Foundation Wendy Sommers - The Sarcoma Foundation Suzanne Leider - The Sarcoma Alliance.

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Presentation on theme: "November 13, 2004. Our Humble Beginnings Wendy Sommers - The Sarcoma Foundation Wendy Sommers - The Sarcoma Foundation Suzanne Leider - The Sarcoma Alliance."— Presentation transcript:

1 November 13, 2004

2 Our Humble Beginnings Wendy Sommers - The Sarcoma Foundation Wendy Sommers - The Sarcoma Foundation Suzanne Leider - The Sarcoma Alliance - Fall 1999 Suzanne Leider - The Sarcoma Alliance - Fall 1999 Website Website Phone Counseling Phone Counseling Personalized Education Packets Personalized Education Packets Sage Cuisine Sage Cuisine Suzanne’s Living Room Suzanne’s Living Room

3 OUR MISSION Guidance Guidance Education Education Support Support

4 I was searching the internet to find information about my cancer. I’m glad I found you. I’m not alone. I was searching the internet to find information about my cancer. I’m glad I found you. I’m not alone.Tony

5 Our 43-year-old sister was diagnosed with liposarcoma and has a football-size tumor on her thigh… Thank you for this website. I’ve been reading through it for the past 4 hours and although I’m still scared and in a panic, I feel an odd comfort in knowing I can sign on to this site again and again. Our 43-year-old sister was diagnosed with liposarcoma and has a football-size tumor on her thigh… Thank you for this website. I’ve been reading through it for the past 4 hours and although I’m still scared and in a panic, I feel an odd comfort in knowing I can sign on to this site again and again.Lisa

6 I am a 1 yr survivor…after years of misdiagnosis and 2 bogus rotator cuff operations, my sarcoma was finally discovered by chance. Unfortunately, it was a foot long and 6 inches wide and had eaten through my scapula. This website is great for us sarcoma folks. There isn’t too much out there. I am a 1 yr survivor…after years of misdiagnosis and 2 bogus rotator cuff operations, my sarcoma was finally discovered by chance. Unfortunately, it was a foot long and 6 inches wide and had eaten through my scapula. This website is great for us sarcoma folks. There isn’t too much out there.Frank

7 Here and Now Website Website Phone Counseling Phone Counseling Personalized Education Packets Personalized Education Packets Monthly Support Groups Monthly Support Groups Newsletter (Biannual) Newsletter (Biannual) Chatroom Chatroom Ocean of Hope Campaign Ocean of Hope Campaign Co-Sponsor Sarcoma Awareness Week with Cancersource.com Co-Sponsor Sarcoma Awareness Week with Cancersource.com Presence at the NCI, MSTS, ASCO, CTOS, ONS Presence at the NCI, MSTS, ASCO, CTOS, ONS Collaboration with Various Sarcoma Organizations Collaboration with Various Sarcoma Organizations

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10 My 25-year-old boyfriend has epitheliod malignant peripheral nerve sheath tumor. His doctors say the safest treatment would be to amputate; one doctor says he’s only seen one other person with this diagnosis. Do you have any information to help us? He’s an artist and doesn’t want to lose his arm. My 25-year-old boyfriend has epitheliod malignant peripheral nerve sheath tumor. His doctors say the safest treatment would be to amputate; one doctor says he’s only seen one other person with this diagnosis. Do you have any information to help us? He’s an artist and doesn’t want to lose his arm.

11 My 30 year old sister has neurofibro- sarcoma. I know this is rare -- who are the experts?? We have faith in our doctors, but they have admitted they don’t know how to treat her. My 30 year old sister has neurofibro- sarcoma. I know this is rare -- who are the experts?? We have faith in our doctors, but they have admitted they don’t know how to treat her.

12 3 quarterly grants up to $500 3 quarterly grants up to $500 Reimbursement for costs related to seeking an expert second opinion Reimbursement for costs related to seeking an expert second opinion Applications available on our website Applications available on our website

13 Our Future Patient Access to Specialists Patient Access to Specialists Expand Assistance Fund Expand Assistance Fund Definitive List of Sarcoma Centers and Physicians Definitive List of Sarcoma Centers and Physicians Sarcoma Peer-to-Peer Directory Sarcoma Peer-to-Peer Directory Public Education and Awareness Public Education and Awareness Education of Medical Community Education of Medical Community

14 Sarcoma Alliance Public Goals Statement: Striving to improve and extend the lives of sarcoma patients through accurate diagnosis, improved access to care, education and support.

15 www.sarcomaalliance.org THANK YOU


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