Volunteer Training Resources

I. Why do I need training?

1. Training helps new volunteers get to know the people, the program, and the job quickly and efficiently.

2. Training ensures that we are consistent in our message and delivery. It is a way to make the public statement that we are a unified and professional group working toward the same mission and vision and capable of important work.

3. Training is a benefit of being part of the CTF team and comes in different methods:

   • VLTC (Volunteer Leadership Training Conference) - The agenda for this annual meeting includes a combination of workshops, training, and collaboration to enhance the skills of Foundation volunteers by providing the necessary tools to participate in the National Programs and be advocates and messengers of the work of the Foundation. We currently offer sponsorship for this event to those who meet certain criteria, but the event is open to any registered volunteer who wishes to attend at his/her own expense. Ask Connie for details: volunteer@ctf.org

   • VLC Round Table - the intention of these quarterly meetings is for the VLC to touch base as a group throughout the year; to provide a training component, share accomplishments, exciting news, regional spotlights and much more. Only Volunteer Leaders are invited to participate. Want to become a Volunteer Leader? Click here to find out how.

   • Webinars - Many trainings can be found in the form of webinars (see below).

   • Online, self-guided trainings, such as those found here and throughout this sight, are an efficient method of providing resources, which can be accessed as needed and at your own pace and also serve as great refreshers for when you need them.

   • On-the-job training- Two possibilities are the use of the "buddy system" and shadowing. In the "buddy system," a new volunteer works with an experienced person at first, and the experienced person answers questions and makes suggestions. Shadowing is very similar, but the new volunteer is more passive, and watches more than she takes action at the beginning. Ideally, we would love for all of our new organizers to begin this way!

Tools, such as the Walk Communications & Social Media Toolkit, Media Alert and Press Release templates and a Best Practices Guide for follow up with media can be found here.

II. Talking about NF and Children's Tumor Foundation

Looking for advice about a difficult NF question? Not sure if you are representing CTF accurately? Need tips on your CTF elevator pitch? If you have a question, need an answer, or want to share an insight, please email it to vyounger@ctf.org.

What is neurofibromatosis?

Neurofibromatosis, or NF, is an under-recognized genetic disorder that causes tumors to grow on nerves throughout the body. It may lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and cancer. NF has been classified into three distinct types: NF1, NF2 and Schwannomatosis.

Who does it affect and how often does it occur?

NF affects both sexes equally and has no particular racial, geographic or ethnic distribution. Therefore, NF can appear in any family. Half of all cases of NF are inherited from a parent who has NF; the other half are the result of a new or spontaneous genetic mutation.

NF occurs in one in every 3,000 people of all populations and affects millions worldwide. NF2 is much rarer, occurring in 1 in 25,000 people; schwannomatosis is the most rare type of NF, occurring in 1 in 40,000 individuals.

Click here to read more about NF1, NF2 and schwannomatosis.

What are the symptoms?

Neurofibromatosis refers to a group of related disorders with a variety of symptoms that may include tumors, skin findings, bone problems and learning disabilities. These tumors have potential to become cancer and may grow in any area of the body, sometimes leading to blindness, deafness, severe pain, paralysis or other neurologic deficits. Some people with NF are mildly affected, while others have more severe complications.

Is there a cure? If not, what do people do?

Researchers throughout the world are exploring ways to understand NF. Currently, there is no cure, so each symptom of NF is treated individually with interventions such as surgery, chemotherapy or medication. It is important to be evaluated by a doctor who is familiar with NF so concerns can be detected early and treated appropriately. The Children's Tumor Foundation is dedicated to developing a clinic network of experienced NF doctors, as well as funding and supporting research to fight and eventually end NF.

What is CTF's role in helping people with NF?

The Children’s Tumor Foundation is a non-profit organization dedicated to funding critical research that will one day end neurofibromatosis. In addition to benefiting those who live with

NF, this research is also shedding new light on several forms of cancer, brain tumors, bone abnormalities, and learning disabilities, ultimately benefiting the broader community.

The Children’s Tumor Foundation also supports people living with NF and their families with accurate, current and readily accessible information, and assists in the development of clinical centers to create better access to quality healthcare.

What text can I use to describe the Children's Tumor Foundation?

The Children’s Tumor Foundation is a 501(c)(3) not-for-profit organization dedicated to finding effective treatments for the millions of people worldwide living with neurofibromatosis (NF), a term for three distinct disorders: NF1, NF2, and schwannomatosis. NF causes tumors to grow on nerves throughout the body and may lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and cancer. NF affects 1 in every 3,000 births across all populations equally. There is no cure yet – but the Children’s Tumor Foundation mission of driving research, expanding knowledge, and advancing care for the NF community fosters our vision of one day ending NF. For more information, please visit www.ctf.org.

Where does Children's Tumor Foundation spend the money it raises?

Children's Tumor Foundation is rated 4-stars by Charity Navigator. Read here to learn how and where the Foundation uses its funds.

III. Volunteering in an NF Clinic

Information for Clinic Volunteers:

It's important to remember that each clinic is unique and may have it's own set of requirements and expectations for volunteers. Whether you are volunteering in an NF clinic one time or regularly, remember to respect the rules of the institution, the privacy of patients and CTF's expectations for those who represent us.

Please inform Heather Radtke and Connie Sorman of existing or potential involvement with clinic attendance (hradtke@ctf.org; csorman@ctf.org)

1. Review any institutional requirements for being present in a clinic, such as:

   • Background check

   • Immunization records/TB test

   • HIPAA (privacy) training

   • Identification badges

   • Dress code

2. Together with clinic staff, define the role of volunteers in clinics, such as:

   • Educating families about CTF (see Talking About CTF)

   • Recruiting for registry or other research efforts (see NF Registry Training)

   • Providing emotional support for family and patient (see Meeting Newly Diagnosed...)

   • Informing families of upcoming events (refer to: http://www.ctf.org/events/calendar)

3. Personal introduction:

   • Introduce yourself as a volunteer with the Children’s Tumor Foundation

   • If comfortable with sharing, explain your main reason for becoming a volunteer (Do you have a personal connection?)

4. Develop a list of items to bring to the clinic, such as:

   • New diagnosis and other brochures

   • Flyers about upcoming events

   • Other support resources

5. Reminders of professionalism:

   • Follow proper dress codes

   • Maintain a positive attitude

   • Remember to be sympathetic and recognize the variability of NF and the extreme complications or situations that may present themselves in a clinic

   • All information discussed in a clinic setting should remain confidential and not be shared with others

   • No volunteers should offer medical advice. All medical questions should be referred to the child’s physician

Please report any clinic concerns or conflicts to Heather Radtke (hradtke@ctf.org)

IV. Meeting Newly Diagnosed Families (or new to CTF)

Meeting New Families

A Resource for Volunteers

Kate Kelts, RN, BSN

Patient Support Coordinator

_______________________________________

Introduce Yourself

· Explain who you are & why you are there.

· Offer basic information about CTF

o Drive research: CTF funds cutting edge research that will be the answer to ending NF

o Expand knowledge: CTF works to bring attention to NF, educating patients & families, offering resources & education to physicians, and attracting researchers to the field to join us in the fight to end NF.

o Advance care: we are imagining a world without NF, but our work also means better care & and effective treatments for those living with NF now.

· Be brief in sharing your own story

o Example: Hi, my name is Kate and I have a 4 year old daughter with NF1. I am volunteering with CTF today meeting families here in clinic (or at this event) to offer a friendly face and some information about what CTF is doing in the NF Community.

Ask Questions

· What brings you to this event today?

o If you are meeting them in clinic and have been given any basic information by the doctor before meeting share what you know: “Doctor X tells me you are here with your son Joshua today and have just been given a diagnosis of NF1.”

· Are there any resources you are looking for right now?

· Allow them to choose what information they will share. Avoid asking medical questions or pushing for further information about their diagnosis.

Empathize

· Acknowledge any connections between your stories (similar aged children, diagnosis, or complications from NF), briefly.

· Statements such as “This must be hard news to process.” Are preferred over statements that over identify or share too much of your personal story. You are not there to share your story, but to make an initial connection & offer a listening ear.

Offer

· Offer 2-3 concrete ways you and/or CTF can offer support, encouragement, and/or opportunities for engagement.

o NF Registry

o Local events or support groups

o Regional FB page

· End with: Do you have any questions for me? Are there any other ways I can help today?

STOP & Refer:

· Medical questions, treatment options, finding the best doctor: Refer them to our Patient Support Coordinator Kate Kelts kkelts@ctf.org

· Questions about connecting with other NF families. We work hard to protect the preferences & privacy of our NF families, please do NOT offer contact information for other families instead refer them to Connie Sorman csorman@ctf.org if you have not already referred to Kate. Both Connie and Kate can make those connections.

· Complaints or questions about the NF Clinic Network: refer them to Heather Radtke hradtke@ctf.org

· How to get more involved in fundraising with CTF: refer to regional development team (is that right?)

· Any questions that make you uncomfortable! You are there as a resource, anything you are unsure of can be directed to Kate Kelts for further discussion.

VI. NF Registry Training

If you have agreed to volunteer at an event or in a clinic, which promotes the NF Registry, by handing out information, answering questions, or helping patients to create an account, please complete this training in advance of your service.

1. Watch this informational video prepared by Kate Kelts, Patient Support Coordinator for CTF.

2. Print a copy of the NF Registry Talking Points and FAQ documents (linked below) to review and take with you.

3. Familiarize yourself with www.nfregistry.org, especially the NF Registry FAQ, signing in or creating an account, and how to find clinical trials. Although you will not be asked to walk patients through the entire process of signing up for the registry, it will be helpful to know how to do it if someone has a question or to assist with setting up an account.

To expedite the process of joining the Registry at an event, it's best to have the individual create an account onsite (about 2 mins) and then complete the questionnaire (which takes the most time) at home. They can jot their password hint down on a Registry card if you have them available. This will serve as a reminder in addition to the email that they will get asking them to complete the process.

4. If you are asked any specific questions regarding a patient's account, other than basic troubleshooting such as, "How do I know if I'm registered?" please refer the individual to: nfregistry@patientcrossroads.org.

5. You may also want to practice answering questions that you may get with a friend or family member. Additional FAQs can be found here: http://www.ctf.org/understanding-nf/nf-registry

Troubleshooting:

• How do I know if I'm registered?

  • Ask the patient to try to sign in using an email address and click on "Forgot my password." If there is an account registered to that email, a reset link will be sent to the account. If there is not an account registered to the email, the patient has not yet registered (unless there are other email addresses to check).

To speak about the NF Registry:

1. See NF Registry Training above

2. Let us know that you've been asked to present! Email Heather Radtke: hradtke@ctf.org and copy Connie Sorman: csorman@ctf.org and Pam Knight: pknight@ctf.org

3. There is a Slide deck included in the links at the bottom of this page, which can be used for the presentation. Please review it, practice it and if you have any questions, please ask Heather Radtke: hradtke@ctf.org or Pam Knight: pknight@ctf.org

VII. Media Interviews 101

Please let us know when you will be taking part in a media interview or PSA. We love to have the opportunity to help prepare volunteers for these events as well as to promote the recorded interviews. Contact media@ctf.org when you have an interview scheduled.

Before you do any interview, review the following information and be prepared to answer these questions:

1. Where is the event located? Be specific – know the name of the park or the exact street.

2. What time does the event start? Be specific – be prepared to answer with what time participants should arrive and what time activities start.

3. How does someone attend? Be inclusive – visit <website> to register or buy tickets. Can they also register or buy tickets at the door?

4. What is the purpose of the Fundraising Event? The Children’s Tumor Foundation’s Fundraising Programs are community events to support NF research, raise awareness and provide support for individuals with NF and their families. They are organized by local volunteers, with teams comprised of five to ten members.

5. You may also be asked to share a few sentences about your family’s journey with NF, or asked to have the family member living with NF present. Practice what you want to say in advance and focus on the big picture.

6. If you are going to be in front of the camera, don’t forget to WEAR YOUR OFFICIAL BLUE CTF TEE-SHIRT!

7. If you are going to be interviewed for any outlet (TV, radio, newspaper, magazine, or online), please let your CTF staff partner and the Communications team know – not only are we here as a resource, but we also want to be cheerleaders for you and help share the coverage with our community.

BEST PRACTICES FOR INTERVIEWS

1. Before the interview, think about what you want to say – about the event, about your family, and about neurofibromatosis (see "Talking about NF and CTF" above).

2. Answer in full sentences.

3. Be yourself. Don't try to reinvent yourself for an interview.

4. When you’re satisfied with your reply, stop. No need to over-answer or keep talking after you’ve answered the question.

5. Don’t be afraid to pause. Taking a few seconds to think will seem much longer to you than to the reporter or audience, and will make you appear thoughtful and deliberate.

6. Remember to smile and enjoy yourself!

PSAS

Occasionally, radio stations will ask for copy they can read on air. Customize the language below and share.

• 30 SECOND – GENERAL

  • Imagine being told that your child has a disorder for which there are few medical treatments. For parents of children with neurofibromatosis, that is a daily reality. Neurofibromatosis, or NF, causes tumors to grow on nerves throughout the body. There is no known cure, but you can help change that. Come to the Children’s Tumor Foundation [EVENT] on [DATE] at [TIME] at [LOCATION]. Join your friends and neighbors in the fight to end NF. Learn more at ctf.org.

• 30 SECOND -- EVENT PSA – RADIO PERSONALITY

  • Hi, I’m [RADIO PERSONALITY], and on [DATE] I’ll be at the Children’s Tumor Foundation [EVENT], in support of the fight against neurofibromatosis. Neurofibromatosis, or NF, affects one in 3,000 people by causing tumors to grow on nerves throughout the body. And it has no cure... yet. That’s where you come in. Please join me and your friends and neighbors, at [LOCATION] on [DATE] and let’s end NF. Learn more at www.ctf.org.