Volunteer toolkit

Welcome to our volunteer toolkit!

Inside you will find resources to help you on your journey as a volunteer.

RecognitionWays to volunteerOrder materialsEvents and webinarsSupport groupsCurrent advocacy opportunitiesEmailing legislators Calling legislators Meeting with legislators Testifying TemplatesProclamationsOp-eds and letters to the editor Other resourcesPolicies

Recognition

We love celebrating our amazing volunteers! Learn more about Pain Warrior of the Month and our Ambassador of the Year Award here.

Ways to volunteer

Here are some suggested opportunities to get you started. (But we welcome creative ideas for ways to raise awareness and help the community!)

Order materials and handouts

We sincerely appreciate your help in distributing information to fellow pain warriors, health care providers, or other members of your community.

Order materials (sent to you free!) here.

You can also download some materials directly, here:

Events & webinars

See what events are coming up next by checking out our calendar.You can also view upcoming webinars here.

Support groups

Interested in joining a support group and meeting fellow warriors? We offer groups in person and over the phone! We also are always looking for support group leaders. Visit www.painconnection.org to learn more!

Current advocacy opportunities

For current legislative opportunities, go here.

For calls-to-action with agencies like the FDA, CDC, HHS, etc., please go here.

For ideas on non-advocacy opportunities, go here.

Emailing legislators

Sending an email is an effective and efficient way to communicate with legislators; in fact, many offices now prefer to receive communication electronically. Email is a great way to make sure your voice is heard in a timely fashion, right up until your legislator votes on an issue.

  • Be courteous, even if you disagree with the legislator’s position.
  • Be brief. Email is a quick form of communication, so an email should be shorter than a letter.
  • Express yourself clearly. Only discuss one issue and limit yourself to a few key points.
  • Follow up! Your legislator is likely to respond to your email. If he or she does what you requested, respond immediately to say thank you.

Subject line and greeting

  • Nail the subject line. In the chance that your email is not opened, creating a clear subject line can still make an impact. The subject line should be the action you request in the email (e.g. “Vote YES on H.B. 5678”).
  • Use a formal business style. Use the proper address and salutation to begin your email (e.g. Dear Senator/Representative [Last Name]).

First paragraph

  • Identify yourself as a constituent and include your name and hometown in the email.
  • State the problem in the first paragraph. Include a bill number and title whenever possible.
  • State what you would like the legislator to do. Make your request for action as specific as possible (e.g. “I urge you to vote in favor of SB 1083: An Act relative to Step Therapy”).

Second paragraph

  • Be informative. Explain why this issue is personally important to you. Explain how the issue affects you, your family, etc.
  • Provide a few facts about the issue/bill or what it would mean for constituents like yourself, if passed.

Closing

  • Restate your request (e.g. I urge you to vote in favor of SB 1093).
  • Ask for a response. Ask for a commitment from your legislators on the issue, and request that they explain their position to you. If he or she sends you a response that does not directly say what the legislator has done about the issue, feel free to email again and politely ask for clarification.
  • Thank the policymaker for devoting time to your issue and for past action.

Calling legislators

Calling is the second most effective way to express your view to your representative—and it only takes a few minutes! If an issue is heating up and moving fast, calling is one of the best ways to make an impact.

Guidelines for making an effective call

  • Prepare what you want to say prior to your call. You should limit your remarks to about a paragraph of text. You will most likely speak to one of the legislator’s staff members, and that’s okay! Ask to talk with the staff member responsible for health care-related legislation. If they are not available, you may leave a message with the receptionist or leave a voicemail.
  • Identify yourself as a constituent. (E.g. “Hello, my name is Ellen Smith, and I am a constituent from Scituate, Rhode Island.”)
  • If taking action on a priority issue related to U.S. Pain Foundation, state that you are a volunteer advocate for the organization. (E.g. “As a constituent and advocate for U.S. Pain Foundation, the largest nonprofit for Americans living with chronic pain…”)
  • State the issue that you are calling about. Include a bill number and title.
  • State what you would like the legislator to do. Be specific and have a precise request. (e.g. I urge you to vote in favor of Senate Bill 1083, An Act to Legalize Medical Cannabis for Pain).
  • Briefly explain your position and reasoning in 1-3 sentences (e.g. “As a person living with pain, I believe that…” or  “This bill is essential to my own personal health because…”).
  • Ask for your legislator’s position on this issue. You may request that your legislator send you more information about his/her position.
  • Be positive and courteous. Write down the name and contact information of the person you spoke with in case you decide to call back. Thank the person who takes your call. Leave your name, address, and phone number for any necessary follow up.

Meeting with legislators

As a constituent, you have the right to request a meeting with your lawmakers by writing/emailing a letter or placing a call. Speaking with your lawmakers or their staff members in-person is an effective way to educate them about pain issues, even if there is not a particular bill to discuss. They will think of you as someone who is knowledgeable on this issue and may contact you when a bill relating to pain care is being considered in the future. Based on our experiences, we’ve provided successful strategies for arranging a sit-down conversation with officials.

Scheduling

  • It is most effective to request a meeting with the policymaker who represents your district. Placing a request for a meeting can be conducted via email, over the phone, or using the meeting request form on the lawmaker’s website. (For a template email or letter, see page 16.) Be sure to include the following details in your verbal or written request:
  • The reason for wishing to schedule a meeting (E.g. “I’d like to request a date and time to meet with you and discuss House Bill 123.”.)
  • The names of everyone planning to attend the meeting.
  • If you requested a meeting online, follow-up one week later to ensure your request was received by the individual in charge of scheduling; avoid sending multiple meeting requests through email.

Plan your meeting in advance

You will have limited time—maybe only 15 minutes—so it’s important to be prepared. Review key talking points, which  U.S. Pain is happy to provide you with. Make an outline of what you want to present. This outline should include:

  • An introduction and a statement of your meeting purpose with the legislator
  • The issue you are supporting or opposing and how it impacts you (share your pain story)
  • A request of the legislator. For example, asking him/her to support or oppose an issue or specific bill
  • An offer to help the legislator. This is especially appreciated if  they’re committing to support legislation (they might ask you to testify at a hearing, find supporting facts or statistics, or help them identify other constituents with the same concerns)
  • A thank you and closing statement

Personalize your message

When telling your story, emphasize how the issue at hand impacts you personally; note how a policy would benefit or hinder your life and chronic pain. Be prepared with a brief (90 second) “elevator speech”—one that explains your issue, the bill or issue you wish to discuss and what you want done. This will come in handy if the legislator’s schedule changes (which happens often) and only has a few moments to hear your position. You may want to practice your personalized message out loud a few times so you feel comfortable speaking about your pain and the health care topic. Stand in front of a mirror or ask if you can practice with a friend/family member!

Be prompt and patient

Arrive on time; ask ahead of time the exact meeting location (building, room/ floor), parking information, mapping out how long it takes to arrive at the office and other logistical details. (If you have any mobility challenges or special accessibility needs, contact the office staff in advance to inquire about accommodations.)

Be professional

First impressions are lasting. Try to dress business casual, comfortable shoes are fine! Greet the legislator with a smile and a handshake. During the meeting, stick to the issue at hand, speaking calmly and with purpose; refrain from slang, jargon, or vulgar language. Legislators are more inclined to listen to constituents who have a well-honed message and are courteous, and who call upon their own personal experiences to describe why the issue is so important to them. At the end, thank the legislator for his or her time and consideration.

Follow up

Be sure to send a thank you email or letter to your legislator. This short, yet meaningful message can let the legislator know that you are willing and available to work alongside them on a specific policy issue/bill, or future endeavors impacting the chronic pain community. This lets the elected official know that you can serve as an invaluable resource during the implementation of proposed measures and that he/she can call on you to weigh in on topics relevant to individuals living with chronic diseases.

Testifying

When a bill or policy is under consideration, a policymaking body may hold a public hearing. During a public hearing, individuals are allowed to testify about their position on the issue. You can submit written testimony, but it is most powerful when you submit testimony and show up in person to testify.

To find out how, when, and where to testify, visit the state or federal policymaking body’s website. There, you will find information about the date of hearings; the location of hearings; and specific directions for submitting testimony or testifying in person, such as deadlines and time limits.

Written testimony

  • Briefly introduce yourself. 
Explain who you are and who you are representing. “My name is Emily Lemiska. I am a resident of Hartford, Connecticut. I am here as a person with chronic pain and as an advocate for the U.S. Pain Foundation.”
  • State your position. 
In a few sentences, tell the committee or panel whether you support or oppose the bill.
  • Explain why. 
Describe why you support or oppose the bill. Try to be as concise as possible. Provide statistics or references to studies wherever possible, but make sure to emphasize your personal story and perspective as well.
  • Reiterate your specific recommendations. Focus on what the policymaking body can do to help solve the problem at hand.
  • Offer thanks and the opportunity for follow-up. Thank the policymaking body for their consideration and provide your contact information where you can be reached for questions.

Testifying in person

  • Confirm accessibility. State houses and government buildings have various levels of accessibility. Before you go, check their website for information about elevators and other special accommodations.
  • Be flexible. The policymaking body may have a large number of bills to get through during a particular hearing or meeting. If the group doesn’t get to address your bill as scheduled, it may be pushed to a future date. Be sure to check the website leading up to the day of the hearing to ensure your bill is still scheduled to be heard. Even on the day of the hearing, typically you won’t know exactly when your bill will be addressed during the meeting. It depends on the length of discussion on the bills before it, which is hard to predict. Arrive early to ensure you don’t miss your bill.
  • Practice and prepare. Prepare your written remarks in advance and time yourself to ensure you don’t go over the designated time limit. Depending on the policymaking group’s rules, you may also be required to submit your written testimony in advance of testifying in person.
  • Arriving and departing. Check the policymaking body’s website for details. Once you arrive at the hearing, typically you will usually need to sign up on the sign-in sheet for your bill. The sooner you sign in, the quicker you can get up to testify when your bill is brought up. However, once your bill has been heard and you have testified, you are free to leave–even if the full hearing isn’t over.
  • Don’t stress! Remember that it is your right to testify as a constituent, and that policymakers truly do want to hear from you. There is no wrong or right way to testify; what matters is that you are honest and tell your story.

Templates

Sharing your story – template

My name is___________ and I’m from [CITY/TOWN]. I live with_______________, a [define the condition in one sentence]. I am also a volunteer advocate for the U.S. Pain Foundation.

*Give 1-2 examples of how you are affected by this condition; share how it impacts you on a personal, physical, social, emotional, and/or mental level.

I am here today to discuss [policy issue/bill]. As you may be aware, [insert 1-3 short facts about the issue/bill]

*If you’ve been personally impacted by this issue, if the proposed legislation would positively or negatively impact your life, express this here. (E.g. “If this legislation passes, I will be able to continue the medical treatment that has been keeping me stable and able to work, without negative interruptions to my therapy.”)

As a person living with chronic pain and as your constituent, I’m asking that you [SUPPORT/OPPOSE] this [policy issue/bill]. This vulnerable population faces not only societal stigma, but  daily challenges related to [policy issue/bill]. Your [SUPPORT/OPPOSITION] is a proactive step towards standing with children and adults living with debilitating and, in some cases, life-threatening diseases that cause pain. Thank you for taking the time to speak with me and hear my personal pain story. I am happy to serve as a resource as you consider making a decision on this topic.

*Should the legislator ask questions during or at the end of your story, don’t be afraid to let them know that you’ll get back to them with the information they are seeking.

Requesting a meeting – Letter/email template

[INSERT DATE] The Honorable [INSERT LAWMAKER’S NAME] [INSERT OFFICE ADDRESS]

Dear [SENATOR/REPRESENTATIVE] [INSERT NAME],

I am a constituent and a volunteer advocate for the U.S. Pain Foundation. I am writing to respectfully request a meeting to discuss [policy issue/bill number] and how it impacts individuals like me, who live with a chronic condition that causes pain. As you may be aware, there are 50 million Americans living with chronic pain, including many in the state of [insert state’s name]. I would greatly appreciate the opportunity to meet with you in person so you can learn more about this [issue/bill] and how it impacts the community you serve.

Please let me know, based on your schedule, a date and time in the near future to hold a conversation at your office. I will follow-up with your office in the next week or so to confirm receipt of this request. In the meantime, should you have any questions concerning [insert policy issue/bill number], please don’t hesitate to contact me at your convenience. My number is [INSERT PHONE NUMBER] and my email address is [INSERT PRIMARY EMAIL ADDRESS].

Respectfully,
[INSERT FULL NAME] [INSERT MAILING ADDRESS]

*To include your volunteer role/title within your request, please contact a member of the U.S. Pain Advocacy team.

Thank you note – template

[INSERT DATE] The Honorable [INSERT LAWMAKER’S NAME] [INSERT OFFICE ADDRESS]

Dear [SENATOR/REPRESENTATIVE] [INSERT NAME],

As a constituent and a volunteer advocate for the U.S. Pain Foundation, I appreciated the opportunity to meet with [you/your staff member, ___________) on [INSERT DATE] regarding [policy issue/bill number]. As stated during our meeting, I am asking that you [support/oppose] this [policy issue/bill number] because [PROVIDE 1-2 TALKING POINTS].

*Insert follow-up answers here. E.g. “To answer your question, 26 states have passed laws related to_____.”

Again, I appreciate the change  to have discussed [policy issue/bill number and title] with you (your staff). Should you need further information or assistance, please do not hesitate to contact me at _____________.
Sincerely,
[INSERT FULL NAME] [INSERT MAILING ADDRESS]

Proclamations

Local and state politicians, or other persons of authority, regularly issue public announcements called proclamations. These announcements are designed to give leaders an opportunity to support their constituents by conveying the importance of specified causes. Proclamations can help bring awareness to pain related conditions in a variety of ways, and increased awareness can result in better outcomes for the pain community.

How to submit a proclamation request

Ambassadors are encouraged to request proclamations from state and local politicians through a template provided by U.S. Pain.

  • Email proclamations@uspainfoundation.org expressing your interest in submitting a proclamation
  • A response with the appropriate template and instructions on how to proceed will be sent
  • U.S. Pain encourages requests be sent two months prior to the awareness month

Learn more about proclamations and how to request them on the Pain Awareness Month website.

Op-eds and letters to the editor

Op-eds and letters to the editor are a great way to raise awareness about a particular issue. Op-eds are usually 500-750 words and address the writer’s perspective on an important topic. Letters to the editor are shorter, at 150-200 words, and usually address a previously published news story. If you wish to represent U.S. Pain or speak as a volunteer of U.S. Pain, remember you must get permission first.

General tips

  • Make sure your op-ed or letter to the editor is timely. Try to tie your point to a recent news item, editorial, letter or event involving pain awareness.
  • Keep it simple. Avoid using complicated sentences, big words, and acronyms.
  • Avoid personal attacks, offensive language and political name-calling (e.g, “far right,” or “liberal”). Such language will turn off the average reader.

Submitting your letter

  • If possible submit your piece by email (preferred). Newspapers typically list on their editorial pages or websites the email addresses for submitting letters to the editor.
  • Be sure to include your contact information so that the newspaper can verify that you sent the submission.

If published

  • Let us know your piece has been published. Include a link if available.
  • Consider emailing the link to your elected officials. Make sure to mention you are a constituent and ask for their support on the issue.

Other resources

bit.ly/ChronicPainFacts – This is U.S. Pain Foundation’s latest infographic relating to chronic pain facts.

uspainfoundation.org/advocacy – Check the advocacy section of U.S. Pain’s website for the latest online engagements, position statements, and more!

uspainfoundation.org/news-events/ – Stay updated on upcoming events relevant to our volunteers and advocacy efforts.

uspainfoundation.org/resources – A collection of supportive resources can be found here.

bit.ly/ChronicPainBooklet – This is an educational guide aimed to help those within the chronic pain community, their caregivers, clinicians and lawmakers understand the complex disease of chronic pain.

uspainawarenessmonth.com – Your go-to website during Pain Awareness Month, the organization’s largest month-long campaign initiative.

uspainfoundation.org/order-materials – You can order free U.S. Pain Foundation educational materials and handouts to distribute. These can be especially helpful to bring to legislative meetings!

Code of conduct

At all times, we ask that U.S. Pain Foundation ambassadors hold themselves to certain standards of behavior. Please view our Code of Conduct for full details.

Media policy

All U.S. Pain Foundation ambassadors must first forward media requests and media pitches to emily@uspainfoundation.org for approval prior to speaking on behalf of the organization (you can always speak to the media representing yourself, as a patient!). Please review the official Media Policy for more details.

Still uncertain of whether you can speak on behalf of U.S. Pain? Check out this flowchart.