A Review of the October 2007 Meeting of the International Sarcoma Patient Advocate Network (iSPAN)

An ESUN Editorial by Matt Alsante, Arthur Beckert and Melissa Hill

The International Patient Advocate Network (iSPAN) held its second meeting on October 31, 2007 prior to the annual meeting of the Connective Tissue Oncology Society (CTOS) annual meeting in Seattle, Washington. iSPAN is open to all patient advocacy organizations and committed individuals with the goal of fostering communication and collaboration to improve the lives of those diagnosed with sarcoma. iSPAN serves as a common voice to support sarcoma patient advocacy, legislation and research. This year over 20 individuals met representing over a dozen organizations. Additionally, the meeting was generously supported by CTOS and by Novartis Pharmaceuticals, Inc.

The meeting began with a brief presentation from Arthur Beckert summarizing the history of iSPAN and the goals the meeting. One tangible outcome of the first meeting of iSPAN was the first comprehensive directory of sarcoma organizations. He hoped that advocacy groups would agree that many issues could be better addressed if sarcoma advocacy groups would work together. These include raising awareness, assuring that all sarcoma patients receive the best care in the most appropriate setting, increased funding for research, giving more flexibility for drug research and approval for rare diseases, tissue banking, and patient registry.

Raising Sarcoma Awareness

The group next talked about raising awareness about sarcoma in general and about the unique needs of sarcoma patients. Currently there are a number of sarcoma awareness events in the US, mostly in June and July. One step in raising awareness would be for the sarcoma community to agree on a common time for awareness events. Bruce Shriver of the Liddy Shriver Sarcoma Initiative gave a presentation about the Team Sarcoma Initiative and the incredible growth this has had during the past few years.

The group agreed that designating July as Sarcoma Awareness Month would give everyone a long period of time to put together events to bring attention to sarcoma. Everyone agreed that there was no pressure or need for any organization to modify their existing calendar. However it is hoped that organizations would organize events that would generate local, regional or national press coverage. These events could be coordinated with existing activities such as Team Sarcoma or could be held on their own. Events could include walks, runs, picnics, educational session at hospitals, and even include governmental proclamations of July of Sarcoma Awareness Month. Finally, everyone agreed that this idea should be shared with organizations that were not able to attend CTOS to get their input.

July as "Sarcoma Awareness Month:" An Update

Since iSPAN met in November a notice was sent out about designating July as Sarcoma Awareness Month. All comments were positive, so it’s official. Please do everything you can to schedule some kind of event or activity in July. A great opportunity is participating in the Team Sarcoma Initiative.

ARIAD – Upcoming Phase III Trial of Deforolimus

Camille Bedrosian, MD of ARIAD next gave a presentation on the upcoming Phase III trials of Deforolimus (formally AP23573). The trial will be open to those with metastatic soft tissue and bone sarcomas. Deforolimus is an mTOR inhibitor that affects cell growth, division, metabolism and angiogenesis. By blocking mTOR the cancer cells will starve and die. ARIAD recently received FDA approval for the Phase III study design; a number of centers throughout the world are participating in the trial. ARIAD hopes to enroll 650 patients at 125 sites.

Advocacy Initiatives

Mark Thornton, MD next gave an overview of the Sarcoma Foundation of America (SFA) and its efforts to improve the FDA’s drug approval process for rare diseases. SFA along with the Alliance Against Alveolar Soft Part Sarcoma has petitioned the FDA to modify its drug approval process for rare diseases. This "Citizen’s Petition" can be approved through an administrative process and does not need changes in current regulations or law. Briefly this petition outlines a streamlined process for testing and approval for new agents for rare cancers.

Estelle Lecointe, AFPS, Ensemble contre le GIST gave a presentation on activities of the GIST community in France. The most important is their support of two clinical studies.

What's Next?

Everyone agreed that it is important that the advocacy community work together on the many issues of common interest. It is equally important that iSPAN serves as a vehicle of support for the sarcoma community so that every organization can continue to grow and prosper, retain their independence and stay true to their mission.

Attendees

Matt Alsante - Sarcoma Foundation of America
Simon Baconnier, PhD - Conticanet
Arthur Beckert - Sarcoma Alliance
Camille Bedrosian, MD - ARIAD Pharmaceuticals, Inc.
Lora Bennett - Sarcoma Foundation of America
Lora Box - Sarcoma/LMS Advocate
Chappie Conrad, MD - Northwest Sarcoma Foundation
Melissa Hill - Northwest Sarcoma Foundation
Estelle Lecointe - AFPG, Ensemble contre le GIST
Charisse Litchman - Desmoid Tumor Research Foundation
Dave Murphy - Sarcoma Alliance
Ross Pettit, MD - ARIAD Pharmaceuticals, Inc.
Marlene Portnoy - Desmoid Tumor Research Foundation
Mike Prozan - GIST Support International
Fatima Scipione - ARIAD Pharmaceuticals, Inc.
Beverly Shriver, RN - Liddy Shriver Sarcoma Initiative
Bruce Shriver, PhD - Liddy Shriver Sarcoma Initiative
Robert Stutman - GIST Cancer Research Fund
Suzie Siegel - Sarcoma/LMS Advocate, LMS Direct Research
Mark Thornton, MD - Sarcoma Foundation of America
Lisa Tichenor - wwww Foundation, Inc
Tom Tobin, MD - Sarcoma Foundation of America
Jeanne Whiting - Desmoid Tumor Research Foundation

iSPAN: the International Sarcoma Patient Advocate Network

An ESUN Editorial by Sharon Anderson, MSW

A collaboration summit of directors of various sarcoma advocate organizations convened on November 19, 2005 in Boca Raton, Florida, for three hours before the start of the 11th Annual Connective Tissue Oncology Society (CTOS) Meeting. The group launched a collaborative alliance called, International Sarcoma Patient Advocate Network (iSPAN).

Meeting Attendees

A Beginning

Over the last five years, multiple groups and foundations have sprung up in the sarcoma community. The meeting was a beginning attempt to support and strengthen all our mutual efforts and effectiveness.

For the first time, 27 key leaders representing 14 different foundations came together to:

Learn about each organization’s unique role, efforts and contributions
Establish a communication network between all groups
Discuss the most current developments, issues and needs for advocates
Define mutual goals and collaborative strategies

Building a Network

A pre-meeting survey and phone interviews solicited opinions and suggestions from those who could not attend, as well as those who did. All participants unanimously expressed great support for networking and desired continued communication among the sarcoma foundations.

A directory of 50 sarcoma advocate organizations & foundations has been drafted and distributed among the groups. The directory helps to identify each other’s services. Not only can we now better direct patients to get the specific help they need, but also support each other’s efforts by adding all the website links on our own.

A task group was also formed to plan future annual iSPAN meetings and communications.

Issues for Mutual Collaboration

A detailed list of needs and issues for possible collaborative work was generated and prioritized by the pre-meeting survey. This list served as a catalysis for discussion and decision-making. Three main categories emerged:

Research–increasing studies/clinical trials
Patient education, support and outreach
Standards of care for all sarcoma treatment

Some of the focus areas within each of these categories that were discussed are:

1. Research–increasing studies/clinical trials

Funding for sarcoma research Legislative lobbying
Sarcoma tissue bank for researchers
Sarcoma patient registry for researchers
On-going collaborations with researchers & advocates
Drug Development Incentives for pharmaceutical companies
Expediting clinical trials
- Increased participation
- One source to find sarcoma trials

2. Patient education, support and outreach bullet Support groups at hospitals

Treatment by a sarcoma team
Shared materials, resources list & guidelines in all medias/languages
Education for advocate organizations
PR campaigns for awareness

3. Standards of care for all sarcoma treatment

Physician education for early & correct Dx

Updated standards for all doctors
Better training in medical school

Recruitment & training of future sarcoma "EXPERTS"

Commitments

Two iSPAN Task Forces were formed and created goals with concrete action plans for the next six months.

1. Funding Research/Legislative Affairs Task Force

Educate others on our wish to prioritize legislative initiatives
Define our network of contacts
Define our "fundables"

2. Patient Education, Support and Outreach Task Force

Develop a "Sarcoma For The Newly Diagnosed" booklet based on the Sarcoma Alliance's draft document, to submit to the NCI
Develop a "Sarcoma Patient Notebook" based on the Amshwand Sarcoma Foundation's model
Organize a national sarcoma awareness campaign & congressional proclamation of Sarcoma Awareness Month for June 2006

Those interested in participating on either of these iSPAN Task Forces are encouraged to contact me. From the enthusiasm expressed by all advocates, researchers, oncologists, survivors and caretakers, we know that this network holds tremendous potential for joint projects and an unified voice on behalf of all sarcomas. We have taken the first steps of meeting each other, defining our common goals and committing to on-going communication and partnership. To join iSPAN or to be added to the directory of sarcoma advocate organizations and foundations, please contact me.

The creation of iSPAN is to the credit of our advocate leaders, who are proud and passionate about their work, and wish to have an even greater impact on saving lives. Special thanks goes to Deborah Buks for her facilitation help and to the Sarcoma Alliance for providing the meeting room, food and printing of the directory.

Editor's Footnote: The entire sarcoma community owes Sharon its sincerest thanks for finally making this often talked about meeting actually happen. She undertook numerous information gathering tasks and analyzed the data and presented it in an extremely useful way. She and Deborah complemented each other nicely during the meeting. All this helped enormously to make the meeting a success and result in the formation of iSPAN and its Task Forces. This simply would not have happened without Sharon's dedication to and skill in bringing it about.

Prayer Flags for Sarcoma

An ESUN Editorial by Sharon Anderson, MSW

Thirty-two flags, one for each main sarcoma subtype, hung in front of the International Sarcoma Patient Advocate Network (iSPAN) meeting on November 19, 2005 in Boca Raton, Florida. The flags gently moved and reminded us all of the reason we were coming together to join forces. Some of us had lost loved ones to sarcoma. Others were there to support their loved one’s on-going battle. And a few of us were fighting to stay alive ourselves.

Flags

In the Tibetan tradition, prayer flags are hung to send wishes for well being, to celebrate an event, or in honor, sometimes remembrance of another. As the wind carries the prayer off the cloth and into the heavens, the blessings are released to benefit the one who hangs them as well as the rest of the world.

Prayer flags are a heartfelt gift to those who need health, happiness, hope and strength.

Traditionally, prayer flags are made of 100% cotton fabric, of any size or color. A simple hem along the top of each square secures it to the cord on which it is hung. Tibetan monks carved ornate wood blocks to print their messages on the fabric. You can buy authentic prayer flags, or make your own. It is common to personalize your prayer flags by writing names, dates, poems, messages, as we do on gift cards.

It is our mindful intention, compassion and loving kindness in which the flags are made, that creates the healing blessings. Hundreds of flags made of index cards taped to string by school children after the 9/11 terrorist tragedies, personalized with their own thoughts and decorations, are as powerful as any made by dedicated monks in the monasteries of Tibet.

The prayer flags I made for this event, were about 10" wide and 12 " long. The names of the sarcoma subtypes were printed on "iron-on" transfer cloth, available at all fabric or craft stores.

The most challenging part of making these flags was attaining the list of sarcomas. The World Health Organization (WHO) offered the most comprehensive categorization of sarcomas, but it is in the process of being re-written and updated. Several sarcoma experts were consulted, and although there was no absolute consensus, the list below best represents the main types of sarcoma tumors.

List of Sarcomas Included in the Prayer Flag

Acral Myxoinflammatory Fibroblastic Sarcoma
Alveolar Soft Part Sarcoma
Angiosarcoma
Chondrosarcoma
Chordoma
Clear Cell Sarcoma
Dermatofibrosarcoma
Desmoid Tumor
Desmoplastic Small Round Cell Tumors
Endometrial Stromal Sarcoma
Epithelioid Sarcoma
Ewing's Sarcoma Family Of Tumors
Extra-Renal Rhabdoid Tumors
Fibrosarcoma
GIST Gastrointestinal Stromal Tumors
Haemangioendothelioma
Intimal Sarcoma
Kaposi’s Sarcoma
Leiomyosarcoma
Liposarcoma
Lymphangiosarcoma
Malignant Hemangiopericytoma
Malignant Lymphoma
Malignant Mesenchymoma
Malignant Mixed Müllerian Tumors
Malignant Peripheral Nerve Sheath Tumor
Myoperictoma
Osteosarcoma
Pleomorphic Sarcoma Undifferentiated (MFH)
Rhabdomyosarcoma
Synovial Sarcoma
Unclassified

It is my hope to see more & more sarcoma prayer flags with personal messages of hope and healing hanging above in sarcoma centers, support groups, advocate meetings and fundraising/awareness events all over the world.

More about Prayer Flags: Their Origins, Meaning and Use

"Blessings On The Wind: The Mystery and Meaning of Tibetan Prayer Flags," by Tad Wise with a foreword by Robert Thurman. The gift book comes with five authentic prayer flags. Click here to visit the West Wind Collection website and read about this book and many types of prayer flags. Learn About Prayer Flags on the Radiant Heart website.

A Gathering of Advocacy Groups

An ESUN Feature by Bruce Shriver, PhD

Earlier this week, we received the following invitation and attachment to an upcoming meeting of sarcoma advocacy organizations. We are publishing this material as we want to encourage you to contact any of the sarcoma organizations that you have knowledge of and encourage them to attend and, equally important, to suggest to them issues and ideas that you believe should be discussed when they meet in November.

In the spirit of cooperation,
Bruce Shriver

Collaboration Summit for Directors of Sarcoma Patient Advocate Organizations

November 19th, 2005
At the CTOS conference in Boca Raton, Florida

Dear fellow Sarcoma Advocates,

Over the last five years, multiple groups and foundations have sprung up in the sarcoma community. This workshop is to support and strengthen all our mutual efforts & effectiveness.

For the first time, the directors and key leaders of sarcoma advocate foundations and organizations will come together to:

Learn about each organization's unique role, efforts and contributions;
Establish a communication network between all groups;
Discuss current developments, issues and needs for sarcoma advocates;
Define mutual goals and collaborative strategies.

Whether you can attend or not, we want everyone’s involvement! Please complete by November 1st the enclosed:

Survey by directors of sarcoma advocate organizations (confidential)
Sarcoma Advocate Directory (for public distribution)

We will phone all of you in a week to answer any questions. More details will be forthcoming, but due to the Thanksgiving holiday, make your travel plans as soon as possible. This is an exciting opportunity! In Unity,

Sharon Anderson,
MSW Sarcoma Patient & Advocate
Phone: 650-994-2746

Arthur Beckert
Director Sarcoma Alliance
Phone: 415-990-2016

Who should attend?

One to two key representatives of a non-profit organization created for sarcoma advocacy. All foundations focused on any type of sarcoma are encouraged to attend.

Where & when is this workshop?

Boca Raton Bridge Hotel (within walking distance to the CTOS conference). Saturday, November 19th, 2005, 8:30 am to Noon. This does not conflict with attending the other CTOS sessions.

Who is sponsoring this?

Many sarcoma leaders have voiced a need for such a meeting. Several volunteers from multiple organizations have contributed to make this meeting become a reality. A neutral facilitator will moderate this workshop.

Supporters:

Arthur Beckert, Director of Sarcoma Alliance
Jody Cummings, Director of Sarcoma Foundation of America
Gilles Frydman, Founder of ACOR, Association of Cancer On-line Resources
Bruce Shriver, Founder of Liddy Shriver Sarcoma Initiative and ESUN, Electronic Sarcoma Update Newsletter

How can ALL organizations participate? By November 1st:

Complete a confidential survey & phone interview
Submit your group’s information to be distributed in a "Sarcoma Advocate Directory."

Do I need to register for the Collaboration Summit?

Yes, contact Sharon Anderson @ 650-994-2748 or by e-mail. The Collaboration Summit is free. To attend the CTOS conference sessions, you must register & pay a fee.