Preparing for the Road Ahead Preparing for the Road Ahead

Thomas N. Kirk, President and CEOThomas N. Kirk, President and CEOUs TOO International, Inc.Us TOO International, Inc.

Us TOO UniversityUs TOO UniversityTempe, AZTempe, AZ

November 8, 2008November 8, 2008

Us TOO is a vast network of Us TOO is a vast network of people, active volunteer people, active volunteer

leadersleaders We are living in historical times filled We are living in historical times filled

with dramatic unforeseen changeswith dramatic unforeseen changes

We are drawn together in the battle We are drawn together in the battle against prostate cancer, and we all against prostate cancer, and we all share the belief in the power of share the belief in the power of education and peer supporteducation and peer support

We have learned many lessons We have learned many lessons we want to share with otherswe want to share with others

Us TOO is one of the first U.S./International Us TOO is one of the first U.S./International prostate cancer groups (1990/1992), based on prostate cancer groups (1990/1992), based on lessons learned by other earlier advocates (AIDS, lessons learned by other earlier advocates (AIDS, Alzheimer's, breast cancer, etc) Alzheimer's, breast cancer, etc)

We are not alone in the battle…other groups and We are not alone in the battle…other groups and resources are active as well in the US and globallyresources are active as well in the US and globally

Communication is essential, competition or Communication is essential, competition or

cooperation…we have become a resource center to cooperation…we have become a resource center to facilitate, empower and provide supportfacilitate, empower and provide support

Us TOO founded by and Us TOO founded by and governed by those directly governed by those directly

affected affected Learning to Cope through Knowledge and HopeLearning to Cope through Knowledge and Hope

Volunteer-driven organization with “independent” Volunteer-driven organization with “independent” volunteers conducting support groups and doing volunteers conducting support groups and doing other projects. (Support group Guides developed other projects. (Support group Guides developed in the early/mid 1990s and Guidelines in 2005 to in the early/mid 1990s and Guidelines in 2005 to reflect the 2002 Us TOO Mission)reflect the 2002 Us TOO Mission)

Internal communication and planning, Internal communication and planning, cooperation verses enforcement, cooperation verses enforcement, integration/mission focus and resource integration/mission focus and resource development/management development/management

Us TOO Mission, Model of Us TOO Mission, Model of

Peer Support and EducationPeer Support and Education

“Communicating timely, personalized and reliable information enabling informed choices regarding detection and treatment of prostate cancer” (2002)

Someone to Talk to…who understands and new logo (2003)

Us TOO is committed to three key areas, Support, Education and Awareness/Advocacy (SEA Blue, 2007).

Us TOO is made up of several key elements

• Us TOO International, a company with Articles of Incorporation, By-laws and established Policies

• Governance by the volunteer Us TOO Board of Directors & various committees

• Volunteer Medical Advisors• Regional Volunteer Support (Regional Directors

and Coordinators)• Independent volunteer Chapter and Support

Group Leaders Us TOO President/CEO and Professional Staff

Members

Us TOO has survived and Us TOO has survived and grown and has challenges grown and has challenges

aheadaheadUs TOO Income and Program Expenses 2000-2007

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Income in Thousands

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Third Quarter Ordinary Income, Expenses and Net: 2004-2008

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Jan-Sept '04 Jan-Sept '05 Jan-Sept '06 Jan-Sept '07 Jan-Sept '08

Ordinary Income

Ordinary Expenses

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Us TOO Corporate Plan Priority Us TOO Corporate Plan Priority Areas 2008-2011Areas 2008-2011

Board Development and Mission reviewBoard Development and Mission review Increase awareness of the disease, work Increase awareness of the disease, work

closer with physicians and researchers and closer with physicians and researchers and prepare for Us TOO’s 20prepare for Us TOO’s 20thth anniversary in anniversary in 20102010

Develop chapter education/training and Develop chapter education/training and standards to strengthen and expand servicesstandards to strengthen and expand services

Resource minority and underserved pilot Resource minority and underserved pilot programsprograms

Deepen collaborations and advocacy Deepen collaborations and advocacy activities and upgrade web-based servicesactivities and upgrade web-based services

New era of transparency following New era of transparency following 9/11 in 2001 called for Us TOO 9/11 in 2001 called for Us TOO

action action Tightening Federal banking and reporting Tightening Federal banking and reporting

demands on non-profit and for profit demands on non-profit and for profit companies (true grass roots or Astroturf companies (true grass roots or Astroturf organizations)organizations)

Failing Prostate cancer drug trials since Failing Prostate cancer drug trials since 2003 slowing corporate support2003 slowing corporate support

New 990 tax forms in 2007, a global New 990 tax forms in 2007, a global financial crisis in 2008financial crisis in 2008

Us TOO joins the NHA as a VHC member and Us TOO joins the NHA as a VHC member and meets the Standards of Excellence in 2006meets the Standards of Excellence in 2006

NHC Standards of ExcellenceNHC Standards of ExcellenceGood Operating Practices for Good Operating Practices for Voluntary Health Agencies Voluntary Health Agencies

Maintaining the highest standards of Maintaining the highest standards of organizational effectiveness and public organizational effectiveness and public stewardshipstewardship

Aligned with, but more extensive than Aligned with, but more extensive than Standards for Charitable Accounting Standards for Charitable Accounting adopted by BBB’s Wise Giving Allianceadopted by BBB’s Wise Giving Alliance

Governance, personnel policies, programs, Governance, personnel policies, programs, fundraising, finance, accounting and fundraising, finance, accounting and reporting and evaluation. reporting and evaluation.

Standards of ExcellenceStandards of Excellence

Basic Organization: “formal lines of Basic Organization: “formal lines of communication exist between the national communication exist between the national organization and affiliates…so that all organization and affiliates…so that all levels of the organization are pursuing a levels of the organization are pursuing a common set of goals and objectives”common set of goals and objectives”

Program…public education, community Program…public education, community services, advocacyservices, advocacy

Accounting/Reporting: consolidated…less Accounting/Reporting: consolidated…less than $250,000, compilation of statements than $250,000, compilation of statements or combined statementsor combined statements

What is a Chapter in the Us What is a Chapter in the Us TOO Network?TOO Network?

It is an organized group, is a participant in the Us TOO network and is committed to the Us TOO Mission

Chapters vary in leadership background, size and complexity Each recognized by Us TOO and granted a registration charter

agreement which gives the chapter the right to participate in the Us TOO network and use the Us TOO name/logo.

Maintain a chapter contact list, Chapter volunteers conduct regular, free-and–open to the

public support group meetings, Distribute free education and awareness materials at events,

are encouraged to develop and distribute local newsletters, participate in conferences/seminars

Advocate on behalf of prostate cancer awareness and legislation

Compile local library/resource materials.

In addition to regular support group meetings, many Us TOO chapters also engage in some or all of the

following activities:

• Arrange for qualified speakers on topics of interest to their attendees

• Offer educational seminars or symposiums

• Create awareness and educational materials

• Become involved in prostate cancer detection/screening events

• Advocate for national and statewide prostate cancer legislation

• Create regular newsletters, websites or blogs

• Distribute materials at community health fairs

• Speak with the media to tell prostate cancer stories

• Conduct awareness and fundraising events

Us TOO 2008 Draft GuidelinesUs TOO 2008 Draft Guidelines

Why Guidelines?Why Guidelines?

The network is as strong as the weakest The network is as strong as the weakest link.link.

Reaching for quality verses compliance Reaching for quality verses compliance and enforcement.and enforcement.

Evolved over the years. Evolved over the years.

Four Sections of the Four Sections of the GuidelinesGuidelines

Section A. Chapter OrganizationSection A. Chapter Organization Section B. Chapter CommunicationSection B. Chapter Communication Section C. Us TOO Policy ComplianceSection C. Us TOO Policy Compliance Section D. Program and Section D. Program and

Financial/Accounting ReportingFinancial/Accounting Reporting

Us TOO Chapter Guidelines

Section A: Chapter organization

1. Core Support…more than one person

2. Basic Organization/Governance…structure

3. Community Sponsorship…to help on the

ground

Us TOO Chapter Guidelines

Section B: Chapter Communication

1. Contact Information…to stay in

touch

2. Mailing List…to build our network

Us TOO Chapter Guidelines

Section C: Policy Compliance

1. Non-Endorsement…no products or

services endorsed

2. Logo Usage…can be used, seek

permission on when and how

Us TOO Chapter Guidelines

Section D: Program and Financial Reporting

1. Program Reporting…what was accomplished

2. Financial Reporting…new tax requirements and 990

form

3. Program Best Practices…agree to ethical behavior

a. Medical Advice

b. Confidentiality

To Help address the Guidelines, Information, Resources and Tools

are available....

Us TOO’s In-depth website

Us TOO University

Newsletters

Chapter News

Special Patient Education Resources

John Moenck Memorial Resource Center

……PeoplePeople

Chapter Services Manager

Board of Directors

Volunteer Regional

Directors/Coordinators offer

Support

Special Focus Area, Chapter Special Focus Area, Chapter FinancesFinances

To raise money one must be a not for To raise money one must be a not for profit organization or a chapter must work profit organization or a chapter must work directly with the Us TOO home office directly with the Us TOO home office (which is a registered charity in IL and (which is a registered charity in IL and Federally).Federally).

Money raised for all of Us TOO needs to be Money raised for all of Us TOO needs to be reported on our Federal and State taxes.reported on our Federal and State taxes.

We are all in this together, communication We are all in this together, communication is essential is essential

Special Focus Area, Risk Special Focus Area, Risk ManagementManagement

““Volunteers in unincorporated groups Volunteers in unincorporated groups are personally liable for the debts are personally liable for the debts and obligations of the group”and obligations of the group”

As with any volunteer role, it is in As with any volunteer role, it is in your interest to increase your your interest to increase your coverage on your home owner’s coverage on your home owner’s liability policy to cover your work as liability policy to cover your work as an unpaid volunteer.an unpaid volunteer.

The Bottom Line, Wichita The Bottom Line, Wichita Kansas ChapterKansas Chapter

Why We Volunteer…Why We Volunteer…

““The answer is that we feel an obligation to learn all we The answer is that we feel an obligation to learn all we can in order to better understand…so we can refer can in order to better understand…so we can refer those seeking our advice to appropriate materials to those seeking our advice to appropriate materials to help answer their questions and hopefully satisfy their help answer their questions and hopefully satisfy their concerns.”concerns.”

From Emerson:From Emerson:

"To leave the world a bit better, whether by a healthy child, a

garden patch or a redeemed social condition; To know even

one life has breathed easier because you lived, that is to have

succeeded."

Feedback NeededFeedback Needed

The Chapter Leader Guidelines and Standards The Chapter Leader Guidelines and Standards Manual is a DRAFT, we want your feedbackManual is a DRAFT, we want your feedback

2008-2011 Us TOO Corporate Plan was approved 2008-2011 Us TOO Corporate Plan was approved at our September 2008 Board Meetingat our September 2008 Board Meeting

This Draft will help all of us move forward to This Draft will help all of us move forward to better communicate and measure our success in better communicate and measure our success in times of growing transparency, increased times of growing transparency, increased accountability and tightening resourcesaccountability and tightening resources

The Us TOO Board, volunteers and staff are The Us TOO Board, volunteers and staff are resources interested in your growth and resources interested in your growth and development and are looking forward to our 20development and are looking forward to our 20thth Anniversary in 2010!Anniversary in 2010!

Thank You!Thank You!

www.ustoo.org 1-800-80-Us TOO(1-800-808-7866)