Letter from the President & CEO

Letter from the President & CEO Dear Friend, On behalf of the American Brain Tumor Association and the nearly 700,000 individuals living with a brain...
Author: Octavia Dawson
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Letter from the President & CEO Dear Friend, On behalf of the American Brain Tumor Association and the nearly 700,000 individuals living with a brain tumor diagnosis, I want to personally thank you for your interest in becoming a member of the first and only nationwide volunteer network dedicated to the brain tumor cause. As a member of the ABTA CommYOUnity™, you will be a part of a large and growing grass roots movement consisting of patients, caregivers and health care professionals from across the country all committed to increasing awareness of brain tumors; helping patients and caregivers better understand their diagnosis and treatment options; strengthening relationships with the medical, scientific and legislative leaders; and providing much needed support and encouragement to one another. It is our hope that your ABTA volunteer experience is both meaningful and rewarding. As a member of the ABTA family, please don’t hesitate to let us know if and how we can better support your volunteer efforts. With your help, we will improve, extend and ultimately save the lives of those living with brain tumor diagnosis. Sincerely,

Elizabeth M. Wilson President & CEO

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Table of Contents Purpose of the Handbook About the ABTA ABTA Programs & Services CommYOUnity™ Volunteer Network Volunteer Positions Volunteer Training Become an Expert Spokesperson Stay Informed Policies & Procedures

p. 4 p. 5 p. 6 p. 7 p. 8 - 9 p. 10 p. 11 p. 12 p. 13 - 16

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Purpose of the Handbook This Volunteer Handbook has been created to provide you with the important information needed to help you become a more knowledgeable and confident volunteer. It begins with a brief description of the organization’s history, programs and services, dives into details about the volunteer network and reviews all the must-know policies and procedures. Please consider this handbook to be one of your most comprehensive volunteer resources. While you should expect to have many of your questions answered on the following pages, no single resource can cover everything you need to know. If you have any questions, we encourage you to talk with your Volunteer Leader or any of the ABTA staff listed below.

ABTA Staff Contacts for Volunteers Jennifer Sloan, Director of Corporate and Community Engagement [email protected] 773-577-8765 Krysta Michorczyk, National Volunteer Manager [email protected] 773-577-8767 Michelle Dumele, Corporate and Community Engagement Specialist [email protected] 773-877-8766

The ABTA reserves the right to change the policies outlined in this handbook without prior notice. The information and policies described in this handbook replace all prior policies or handbooks you may have received. The Volunteer Handbook does not create a contract for employment, or any rights or obligations on behalf of the ABTA.

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About the ABTA Founded in 1973, the American Brain Tumor Association (ABTA) was the first and is the only national advocacy organization committed to funding brain tumor research and providing information and education on all tumor types and all age groups. For more than 40 years, the ABTA has been providing comprehensive resources that support the complex needs of brain tumor patients and caregivers, as well as the critical funding of research in the pursuit of breakthroughs in brain tumor diagnosis, treatment and care. The organization office is located in Chicago, IL. Mission The mission of the American Brain Tumor Association is to advance the understanding and treatment of brain tumors with the goals of improving, extending and, ultimately, saving the lives of those impacted by a brain tumor diagnosis. We do this through interactions and engagements with brain tumor patients and their families, collaborations with allied groups and organizations, and the funding of brain tumor research. Vision A future where not one life is lost to a brain tumor. Core Values Compassion. We care deeply about people impacted by brain tumors. Community. We realize greater impact through our work with others. Empowerment. We encourage those impacted by brain tumors to make informed decisions and have their voices heard. Excellence. We offer medically sound, evidence-based programs focused on the needs of those we serve. Innovation. We support science and deliver programs that lead to innovative treatments and services. Stewardship. We are committed to fiscal responsibility, efficient use of resources, and results.

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ABTA Programs & Services ABTA website

Recognized internationally as a comprehensive and trustworthy source of brain tumor information. www.abta.org

Education Publications

Publications are offered to patients, caregivers, and health care professionals at no charge by the ABTA on a range of tumor types and other brain tumor-related topics. www.abta.org/brain-tumor-information/publications

CareLine CareLine connects patients and caregivers with information and resources that can help support them in their brain tumor journey. CareLine is staffed by caring professionals who are available Monday - Friday, 8:30 a.m. – 5:00 p.m. CT. Call 800-886ABTA (2282) or email [email protected].

ABTA Connections, Online Support Community A free 24/7-online support community that links patients, families and friends with each other for support and inspiration in a private setting online. www.abta.inspire.com

TrialConnect ® A clinical trial matching service that connects brain tumor patients with appropriate clinical trials based on their tumor type and treatment history. This service is free, confidential and personalized. http://emergingmed.com/networks/ABTA/

Webinar Series Free, hour-long presentations given by experts on topics of interest to brain tumor patients, families and health care professionals. www.abta.org/brain-tumor-information

National Patient and Family Conference Held annually in Chicago the conference brings patients, caregivers and health care professionals together to learn about the latest advances in brain tumor research, treatment and care from leading experts in the field. www.braintumorconference.org

Patient and Family Meetings

Patients, families and caregivers participate in this free one-day educational meeting in communities around the U.S. to gather the most up-to-date brain tumor information and network with each other. www.braintumormeetings.org

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CommYOUnity™ Volunteer Network Launched in 2014, CommYOUnity™ is the first nationwide brain tumor volunteer network dedicated to serving the brain tumor population. As an ABTA volunteer, you play an important role in fulfilling the ABTA’s mission. The success of reaching more people, in more places, in more meaningful ways begins with YOU. Volunteer activities are organized under four general areas designed to provide a formal structure while allowing for flexibility based on the volunteer’s availability and interest.

Help advance the understanding and awareness of brain tumors by engaging with local legislators to advocate on behalf of the brain tumor cause and joining the conversation on social media.

Connect with those impacted by a brain tumor for peer support and inspiration by joining our peer mentor program, CommYOUnity™ Connect, or participating in the ABTA Connections Online Support Community.

Educate and facilitate conversations within the brain tumor community by distributing resources, facilitating community-based education meetings, representing the ABTA at health fairs or starting a local support group.

Provide vital resources to patients and families and fund critical research studies by participating in one of our BT5K or Team Breakthrough events or hosting your own fundraiser.

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Volunteer Positions The ABTA strives to provide volunteers with programs and volunteer opportunities that are meaningful, engaging and in line with the organization’s mission. The various volunteer positions allow volunteers to share their skills or work in an area of interest either remotely or in their local community. In addition to fulfilling the position expectations, volunteers help support events and gatherings hosted or supported by the ABTA in their region. ABTA Advocate Advocates promote the interests of brain tumor patients and their families by lobbying and advocating for legislation and funding on behalf of the ABTA. BT5K Committee Member Each Breakthrough for Brain Tumors Run & Walk (BT5K) has a committee of local volunteers that help promote and plan the event. Committee members work with the ABTA to make the organization’s signature fundraising event a success. Community Liaison Liaisons serve as a liaison between the ABTA and their local health care professionals and community partners promoting ABTA programs and services. Connections Monitor Monitors assist in making the online community an inviting, supportive and helpful place for those impacted by a brain tumor and ensure all posts adhere to the established guidelines. Corporate Partner Corporate Partners work with the ABTA to provide meaningful ways for their company to make a difference. Companies can sponsor and volunteer at events, host their own fundraising event benefitting the ABTA or get involved in another way. Event Volunteer Event Volunteers support ABTA hosted events including the Breakthrough for Brain Tumors Run & Walk (BT5K), Patient and Family Meetings and the annual National Patient and Family Conference. Cont. on next page

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Mentor Mentors provide brain tumor patient or caregiver mentees with a broad range of insight and support as well as help their mentees take full advantage of all the resources the ABTA has to offer. Outreach Specialist Outreach Specialists raise awareness about the ABTA’s programs, services and resources in their community by distributing materials and representing the ABTA at conferences and local events. Skills-based Volunteer Volunteers with specific skills are often needed to help support the ABTA with special projects. There may be opportunities for graphic designers, photographers, HR experts, etc. to use their skills and talents to give back. Social Ambassador Social Ambassadors bring attention to the brain tumor cause by sharing information, photos and stories on various social media platforms including Twitter and Facebook. Volunteer Event Organizer Event Organizers take their passions and interests and turn them into unique fundraising events (i.e. golf outing, bowling event, etc.) benefitting the ABTA. It’s up to the Event Organizer to plan, promote and fundraise for their own event but the ABTA can help by offering some support and resources.

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Volunteer Training The ABTA’s goal is to provide you with the training and tools needed to be successful in your volunteer role. All volunteers are required to complete Volunteer Orientation (formerly ABTA 101) prior to completing their first activity. Select positions may require additional trainings. Trainings are open to anyone and you are encouraged to take as many as you may like. Trainings may be accessed by creating an account in the ABTA’s online learning center and are available at any time. Volunteer Orientation An introduction to the ABTA’s mission, history, programs and services and the Volunteer Network. Required for all volunteers. Social Media 101 An overview of the ABTA’s social media efforts and how volunteers can use social media to raise awareness about the ABTA and the brain tumor cause. Required for Social Ambassadors. CommYOUnity™ Connect Mentor Training Webinar Provides guidance and tools for new patient and caregiver mentors on how to provide the best support to their mentees. This training is done via webinar every 4-6 weeks and required to become a Mentor. Community Liaison Training A required training for Community Liaisons to learn the expectations of their role and gain valuable insight about how to interact with health care professionals effectively. Volunteer Leadership Workshop An annual workshop and volunteer training as part of the annual National Patient and Family Conference in Chicago. This training is for experienced volunteer leaders who are actively engaged with the ABTA. Information on how to get involved is typically available in January/February. Support Group Facilitator Training A four part online training program designed to increase health care professional and volunteer knowledge about brain tumor patient and caregiver support groups. This online training program offers CEUs for those with a clinical background. Leadership Training – coming 2017 10 4815-8319-1329.1

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Become an Expert Spokesperson Your volunteer training, inspiring story and knowledge of ABTA programs and services make you an expert spokesperson for the organization. You are in a position to provide health care professionals and anyone impacted by a brain tumor with critical information about how the ABTA can help support patients and their families. Keep in mind it’s best to talk about ABTA programs and services you have first-hand knowledge of because you will be able to speak about them with confidence and ease. About Brain Tumors    

There are nearly 700,000 people in the U.S. living with a primary brain and central nervous system tumor. Nearly 78,000 new cases of primary brain tumors will be diagnosed this year. Approximately 4,600 children ages 0 – 19 will be diagnosed with a primary brain tumor this year. Malignant brain tumors are the most common cause of cancer-related deaths in adolescents and young adults aged 15-39 and the most common cancer occurring among 15-19 year olds.

About the American Brain Tumor Association 





The American Brain Tumor Association (ABTA) was the first and is the only national advocacy organization committed to funding brain tumor research and providing education and information on all tumor types and for all age groups. The mission of the American Brain Tumor Association (ABTA) is to advance the understanding and treatment of brain tumors with the goals of improving, extending and, ultimately, saving the lives of those impacted by a brain tumor diagnosis. Since its founding, the American Brain Tumor Association (ABTA) has funded nearly $30 million in brain tumor research.

American Brain Tumor Association Information & Support 





The ABTA hosts webinars and regional and national conferences to provide patients, families and health care professionals with the latest information on brain tumor research, treatment and care. You can learn more on the ABTA website at www.abta.org. The ABTA has a toll-free CareLine 1-800-886-ABTA (2282) and email ([email protected]) staffed by caring professionals who are available Monday - Friday, 8:30 a.m. – 5:00 p.m. CT to help connect patients and caregivers with information and resources that can help support them in their brain tumor journey. The ABTA website, www.abta.org, is a comprehensive and trustworthy source of brain tumor information for patients, families and health care professionals. 11

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Stay Informed Connect with the ABTA on Social Media  Facebook.com/theABTA  Twitter.com/theABTA  LinkedIn.com/company/American-Brain-Tumor-Association Email Communication Volunteers can expect to receive regular email communication from the ABTA about the volunteer network, programs and opportunities. You will also receive details about any events that may need volunteer support in your community. Urgent Advocacy-related News When time sensitive action is needed on legislation that will impact federal brain tumor support or funding, you will receive a personal email from Jennifer Sloan, Director of Corporate and Community Engagement, with all the information needed to take action. Often times we need you to take action in a short time frame and may ask you to use your influence to encourage others to act as well. Facebook Group A place for volunteers to share photos and stories of their volunteer efforts and see the full scope of the network’s national impact. The ABTA also posts new volunteer opportunities and shares important updates to keep volunteers informed. Volunteers will be invited to join the Facebook Group after successfully completing their first activity.

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Policies & Procedures Volunteer Rights and Responsibilities The ABTA values its volunteers and the time and commitment they make to our organization. The ABTA strives to give volunteers meaningful volunteer opportunities, effective supervision, full involvement and participation, and recognition for work done. In return, volunteers shall agree to actively perform their duties to the best of their abilities and to remain loyal to the mission, goals and procedures of the ABTA. Purpose of Volunteer Policies The purpose of these policies is to provide overall guidance and direction to individuals engaged in volunteer activities on behalf of the ABTA. These policies are intended for guidance only and do not constitute, either implicitly or explicitly, a binding contractual or personnel agreement. The ABTA reserves the exclusive right to change any of these policies at any time and to expect adherence to the changed policy. Changes to or exceptions from these policies may only be granted by ABTA staff and must be obtained in advance and in writing. Areas not specifically covered by these policies shall be determined by ABTA staff. Definition of “Volunteer” A “volunteer” is anyone who without compensation or expectation of compensation beyond reimbursement performs services at the direction of and on behalf of the ABTA. A “volunteer” must be officially accepted and enrolled by the ABTA prior to performance of the task. Unless specifically stated, volunteers shall not be considered “employees” of the ABTA, but are often the face of the Association. For additional information about Special Case Volunteers and/or Constituents and Relatives as volunteers, please go to the ABTA CommYOUnity™ section of our website at www.abta.org Service at the Discretion of the ABTA The ABTA accepts the service of all volunteers with the understanding that such service is at the sole discretion of the ABTA. Equal Opportunity Policy The ABTA maintains a strong equal opportunity policy. We recruit, accept, train, promote and dismiss volunteers on the basis of personal competence and position performance without regard to race, national origin, color, religion, gender, sexual orientation, age, marital status or physical or mental disability. 13 4815-8319-1329.1

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Harassment Free Environment All ABTA volunteers have the right to a work environment free from harassment of any type. Accordingly, harassment of any type, especially harassment based on a person’s race, color, gender, sexual orientation, marital status, religion, disability, age, national origin or ancestry is strictly prohibited. This prohibition applies to conduct in all ABTA-related settings and functions. Any volunteer who believes that he or she has been subject to harassment should notify the National Volunteer Manager. Any volunteer who violates this policy will be dismissed. Contractual Obligations Unless otherwise noted in writing, the ABTA maintains sole responsibility to execute contracts, agreements, permits, liability insurance and general logistics, including but not limited to, contracts with event production companies, local subcontracts and event location. Volunteers should refrain from entering into verbal or written contractual obligations on ABTA’s behalf related to sponsorships, incentives, goods or services. Media Conduct Volunteers should not represent themselves as a spokesperson of the ABTA, and all media requests for interviews should be sent to the Marketing & Communications Department at [email protected]. Social Media If you wish to speak about the ABTA within your social networks, we ask that you identify yourself as an ABTA volunteer and make it clear that you are not speaking on behalf of the Association. Please ensure that your Facebook, LinkedIn, Google+, YouTube, Twitter, Instagram, Pinterest and other social profiles and related content is consistent with how you wish to present yourself and the ABTA. We do ask that social media accounts are not created to formally represent ABTA in any form or fashion. Safety/Liability The ABTA asks all volunteers to place safety among your highest priority, looking out not only for your safety, but also the safety of others. It is the responsibility of each volunteer to conduct all tasks in a safe and efficient manner, complying with all local, state, and federal safety and health regulations. Safety shall be given primary importance in every aspect of planning and performing all activities.

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Please immediately report any and all injuries (no matter how slight) to the National Volunteer Manager as well as any damage to ABTA property or anything that needs repair or otherwise is a safety hazard. Vehicle Insurance Coverage When the ABTA assigns a volunteer to drive a vehicle that the ABTA owns, leases, or rents in the name of the ABTA, the volunteer is covered by the ABTA’s business auto liability insurance. When volunteers drive their own vehicle or some other vehicle not owned, leased or rented by the ABTA, the ABTA’s automobile liability and physical damage insurance does not apply. A volunteer’s personal automobile insurance policy is primary in the event of an accident occurring while a volunteer is conducting business on behalf of the ABTA. Volunteers are encouraged to discuss their personal insurance program with their insurance agent to determine what coverage is available for claims arising from their volunteer activities. ABTA will required proof of insurance coverage. Certificate of Ability Any potential volunteer who indicates that they are under the care of a physician for any physical or psychological ailment which might impede their ability to work may be asked to present a certificate from the physician as to their ability to satisfactorily and safely perform their duties. Any volunteer who, after accepting an assignment with the ABTA, enters a course of treatment which might adversely impact the performance of their volunteer duties should consult with the National Volunteer Manager. Volunteer Conduct The lasting impression that volunteers make on those they serve and work with is a true reflection of their character. The ABTA expects volunteers to act in a professional and responsible manner: 

Make Realistic Commitments: We understand that volunteers have busy lives. We want you to volunteer with us whether you have 1 hour a day or 1 hour a year to give. All we ask is that once you have made a commitment, you do your very best to follow through with the opportunity. We will work with volunteers to set realistic expectations.



Be Responsible, Punctual, and Considerate: Volunteers should do their best to be on time for their scheduled event or activity. If you will be late or absent, please communicate with your contact at least 72 hours before the expected reporting time.



Be a Positive Role Model: Conduct yourself in a manner that positively reflects on the ABTA and respects the dignity of others. Refrain from 15

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public criticism of participants or other volunteers, and the use of profane, insulting, harassing, or otherwise offensive language. Dress Code Volunteers visibly represent the ABTA. Please be sure that your dress reflects a clean and neat appearance. On occasion, a dress code may be requested based on the activity or program. Alcohol/Drugs When participating in ABTA activities, volunteers are prohibited from purchasing, transferring, using or possessing alcohol, illicit drugs, or prescription drugs in any way that is illegal. If caught or suspected of breaking this policy, ABTA reserves the right to terminate the volunteer’s service or take other action it deems appropriate. Stewardship and Expenses The ABTA does not reimburse volunteers for out-of-pocket expenses incurred as a result of their volunteer efforts. While most volunteers consider their time and expenses to be a part of their donation, volunteers are permitted by law to deduct their out-of-pocket expenses, including parking and the charitable mileage rate of .14 per mile, incurred while providing donated services. The ABTA will do its best to provide information about anticipated out-of-pocket expenses to the volunteer prior to the activity but cannot guarantee that all outof-pocket expenses can be predicted. It is the responsibility of the volunteer to be prepared for any potential out-of-pocket expenses that may be incurred as a result of their volunteer efforts. Please direct questions about Stewardship and Expenses to the National Volunteer Manager.

This handbook is the property of the ABTA and is intended for your personal use and reference as a volunteer of the ABTA. This handbook is not intended to create a contractual relationship between ABTA and you, nor is it intended to create an employment relationship between ABTA and you. The ABTA reserves the right to change, suspend, or delete the benefits, policies and procedures explained in this handbook, or abrogate the whole handbook with or without notice.

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