November 13, 2004November 13, 2004

Our Humble BeginningsOur Humble Beginnings

Wendy Sommers - The Sarcoma Wendy Sommers - The Sarcoma FoundationFoundation

Suzanne Leider - The Sarcoma Alliance - Suzanne Leider - The Sarcoma Alliance - Fall 1999Fall 1999 WebsiteWebsite Phone CounselingPhone Counseling Personalized Education PacketsPersonalized Education Packets Sage CuisineSage Cuisine Suzanne’s Living RoomSuzanne’s Living Room

OUR MISSIONOUR MISSION

GuidanceGuidance EducationEducation SupportSupport

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

TonyTony

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

LisaLisa

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

FrankFrank

Here and NowHere and Now

WebsiteWebsite Phone CounselingPhone Counseling Personalized Personalized

Education PacketsEducation Packets Monthly Support Monthly Support

GroupsGroups Newsletter (Biannual)Newsletter (Biannual) ChatroomChatroom

Ocean of Hope Ocean of Hope CampaignCampaign

Co-Sponsor Sarcoma Co-Sponsor Sarcoma Awareness Week with Awareness Week with Cancersource.com Cancersource.com

Presence at the NCI, Presence at the NCI, MSTS, ASCO, CTOS, MSTS, ASCO, CTOS, ONSONS

Collaboration with Collaboration with Various Sarcoma Various Sarcoma OrganizationsOrganizations

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

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

3 quarterly grants up to $5003 quarterly grants up to $500 Reimbursement for costs related to Reimbursement for costs related to

seeking an expert second opinionseeking an expert second opinion Applications available on our websiteApplications available on our website

Our FutureOur Future

Patient Access to SpecialistsPatient Access to Specialists Expand Assistance FundExpand Assistance Fund Definitive List of Sarcoma Centers Definitive List of Sarcoma Centers

and Physiciansand Physicians Sarcoma Peer-to-Peer DirectorySarcoma Peer-to-Peer Directory Public Education and AwarenessPublic Education and Awareness Education of Medical CommunityEducation of Medical Community

Sarcoma Alliance Sarcoma Alliance Public Goals Statement:Public Goals Statement:

Striving to improve and extend Striving to improve and extend the lives of sarcoma patients the lives of sarcoma patients through accurate diagnosis, through accurate diagnosis,

improved access to care, improved access to care, education and support.education and support.

www.sarcomaalliance.orgwww.sarcomaalliance.org

THANK YOUTHANK YOU