1

Community Connections Volunteer Handbook

National MS Society 2015

2

TABLE OF CONTENTS

ACKNOWLEDGEMENTS 3

INTRODUCTION 4

COMMUNITY CONNECTIONS VOLUNTEER: ROLES AND RESPONSIBILITIES 4

EDUCATIONAL AND SOCIAL PROGRAM STEP-BY-STEP PLANNING GUIDE 6

PROGRAM PLANNING RESOURCES 15

Appendix A-- Program Proposal Form 15

Appendix B- Sample Timeline 16

Appendix C: Programs-in-a-Box Available for You to Use 17

Appendix D: Other Opportunities to Get Engaged 18

Appendix E: MS and the National MS Society 18

Appendix F: Disability etiquette: The language of disability and MS 19

Appendix G: Handling challenging situations 20

Appendix H: Sample Outcome Survey 21

3

Acknowledgements

Author: Reviewed by: Monica Aden Kimberly Koch Senior Manager of Connection Programs Vice President of Programs and Services Advocacy, Services and Research Department Advocacy, Services and Research Department National MS Society National MS Society Also reviewed by: Mary Roberts Associate Vice President of Programs and Services South Central Region National MS Society Jeff Fisher Program Director Upper Midwest Chapter National MS Society Barbara Goettsch Services Manager Greater Carolinas Chapter National MS Society Gregg Robinson Connections Manager Greater Northwest Chapter National MS Society April Wolfe Senior Manager of Outreach Ohio Buckeye Chapter National MS Society

The Society wishes to thank the staff and volunteers of the Upper Midwest Chapter, National MS Society for their work in creating Volunteer Initiated Programs, upon which this handbook was based. Development of the original handbook was made possible through a grant from The Otto Bremer Foundation. Authors of Volunteer Initiated Programs: James Adkinson Senior Manager of Volunteer Engagement, Upper Midwest Chapter of the National MS Society Krista Harding Programs Specialist, Upper Midwest Chapter of the National MS Society

4

Introduction

National MS Society volunteers are a critical link between the Society and the communities you live in. You know your community best and what drives the members of that community to connect and act. You might already be a self-help group leader, Walk MS team captain or member, or an MS activist. You could be all of these and more. This handbook, however, is focused on the work of a specific type of volunteer – the Community Connections volunteer. As a Community Connections volunteer the role is slightly different in that you are the programmatic face of the Society in your local area, strengthening and solidifying our organizational presence. The Society supports your efforts to connect your community to activities and programs that will be most meaningful to them. This handbook includes the tools to help you do that. Maybe you’d like to host a social or educational event for people living with MS or create an advocacy event. Whatever you choose, the Society is available to collaborate and provide you with assistance to make it happen.

Community Connections Volunteer: Roles and Responsibilities Job Description: Community Connections Volunteers connect people affected by MS in their communities not only to the National MS Society, but to information, resources and others to ensure that they have what they need to live their best lives. They provide meaningful, organized activities that are easily accessible to members of the local community who either have MS or know someone who does.

Educate people living with MS about the disease, symptom management, current MS research and strategies for living their best lives with MS.

Connect people to others affected by MS, their community and to resources and services available through the MS Society.

Community Connections Volunteers have a variety of options available to help connect those living with MS to each other and to the National MS Society. Events may include educational programs or social events. Anything that brings people together to connect with others in their community can be considered as long as the activity is safe and appropriate. These activities could be a one-time, annual or an ongoing opportunity. A list of ideas is included on page 7 below. Your first step as a Community Connections Volunteer is to reach out to your chapter and establish a relationship. A staff liaison will be partnered with you and they will be your support for accessing the tools and resources you’ll need to be successful. To find your chapter please call 1.800.344.4867 or visit www.nationalMSsociety.org/Chapters.

5

The staff liaison’s role is to:

Provide training and resources that empower you to represent the Society

Connect you with other possible volunteers in the area

Provide assistance with marketing your event or program

Respond to feedback you collect from your community to improve Society resources and support in that area

My staff liaison is: ______________________________________ Your role is to serve as the program planner and coordinator:

Develop the program’s vision and plan

Implement and deliver the program

Facilitate the evaluation process and provide the Society with results or information from the activity that will help drive further action or connection in that community

Attend ongoing training so you are able to continually represent the Society

Conduct your activity or event in a healthy, supportive environment for people living with MS Your specific responsibilities may include:

Defining the scope of project (vision)

Set measurable outcomes

Develop action plan and timeline

Recruit additional volunteers to help plan and implement the program

Consider budgetary needs, solicit any necessary donations

Secure resources (speakers, venue, etc.)

Manage program logistics

Promote the program/invite attendees

Facilitate and deliver the program

Conduct a program evaluation

Provide feedback about your experience

Initial and Long-Term impact: Community Connections Volunteers play a critical role in addressing the Society's strategic objectives. Volunteers will use their skills, interests and expertise to connect people affected by MS to information, resources and others to ensure they have what they need to live their best lives. Community Connections Volunteers should be:

Enthusiastic about the mission

Comfortable speaking with others about MS

Have an interest in or connection to the program

Desire to use skills and expertise to make an impact

Willing to work with staff to achieve desired results

6

Commitment: Specific time commitments will vary depending upon the program, but expect approximately 10-20 hours per month (1-3+ months) for the planning, delivery and evaluation of the program. Benefits:

Opportunity to work with other great volunteers and professionals

Opportunity to enhance your resume and acquire new references

Meet new people in your community affected by MS

Become part of the movement to do something about MS

Opportunity to connect others living with MS to the information, resources and support to live their best lives

If you are interested in exploring additional ways to become engaged and volunteer at the community-level, such as Walk MS or advocacy, please see Appendix D for more information.

Educational and Social Program Step-by-Step Planning Guide Getting Started To help you begin planning for your educational and/or social program, there is a variety of support available, depending on the type and scope of your program and your needs. Here are some examples of support you can expect to receive:

A staff liaison

Program placement on the chapter’s programs calendar (website, chapter newsletter)

Marketing and promotional support (i.e. fliers, emails and online posts)

If available, a volunteer coach Who will assist me? The staff liaison is your contact at the Society and will work collaboratively with you to provide expertise and guidance on planning, resources and Society guidelines. The staff liaison will help you navigate resource needs and any challenges you face along the way. The staff liaison assigned to work with you will depend on your program’s goal or purpose and the audience you intend to reach. The staff liaison:

Offers general program development guidance

Provides guidance on marketing guidelines and processes

Helps troubleshoot potential issues

Provides necessary training

May recommend speakers for your program

Suggests potential venues in which to hold a program

7

When possible, the staff liaison may also connect you with a volunteer coach who has planned and lead a similar program. Staff liaisons and volunteer coaches act as a resource for you, but you’re ultimately responsible for developing the program’s vision, implementing the plan, delivering the program and facilitating the evaluation process. Important things to know about representing the Society To the people attending your program, YOU are the National MS Society. For some people, your program might be their first experience with the Society, and your professionalism, enthusiasm and attitude will be what they associate with the Society. Below are some tips to help you be a successful representative.

Be friendly, respectful and courteous. Show concern for everyone attending. Your smile and positive attitude can affect each one of them, make them feel welcome and may encourage someone to get involved. Practice active listening. Be open and receptive to comments or questions that may come up at your program. Ask questions to make sure you understand what attendees are saying or asking. Whether they’re looking for specific information or reaching out for support, let them know they’re heard, and you’re there to listen. If you don’t know the answer to a particular question, say so, and then connect them with your staff liaison. Be an objective listener. It’s easy to share stories about your MS or your mom/dad/sister’s MS, but try to keep these to a minimum. As a representative of the Society, you’re referring people to Society resources and creating a safe, inclusive environment for your program. Staff should not tell people which doctor to see or treatment to take, as those are decisions people make in concert with their health care team. As a representative, we expect you follow these same guidelines. For more information on disability etiquette, please see Appendix F.

Planning Your Program or Event Step One: Select a topic or theme. There are a variety of ways to use your talents and interests to plan and execute programs with the Society. Pursue something that you feel passionate about, fill a niche in your community or choose from our menu of options. From social programs to educational opportunities, the possibilities are endless. We ask volunteers implementing programs to operate in accordance with National MS Society policies that promote confidentiality (see page 13), professional conduct, accessibility, non-discrimination, not providing medical advice, affirming life, fiscal responsibility and safety. Volunteers initiating programs can choose topics and speakers for events but have the responsibility to minimize risk and ensure content is consistent with and supports Society policies and our mission. Programs could include:

A family potluck/picnic or ice cream social at a local park

Hosting an educational program about living well with MS

A research symposium, at which a medical professional presents the latest developments in MS research or clinical trials

8

A care partner networking event at a local venue

A couples social, where couples affected by MS can gather to spend time together and connect

A workshop on a topic like estate planning or employment issues

A men's or women's conference

A gathering for young parents or young adults with MS

A newly diagnosed social or educational gathering

A gathering for people living with progressive MS Step Two: Determine program/event goals and objectives. Determining goals and objectives in advance will help you make decisions about your program throughout the planning process.

Consider your rationale for hosting this event.

Would you like to facilitate connections among people affected by MS?

Would you like attendees to gain knowledge about MS by attending your event?

Would you like to give participants the opportunity to socialize in a stress-free setting?

Would you like the event to increase awareness of MS and the National MS Society?

Our hope is that you create a program that meets a specific need in your community and reflects the Society’s

strategic objectives. No matter the content of your program or the number of people who attend, you’re

extending the Society’s reach.

Step Three: Identify your program planning team.

Identify areas where additional volunteer help is going to be needed for planning and executing the event. In

particular, consider asking for help with the set-up and take-down process as well as check-in at the event.

Remember that on the day of the event, you’ll need to be available to address any unforeseen issues, so

having volunteer support to handle predetermined jobs will free you up to take care of the rest.

Potential roles for volunteer(s):

Distributing marketing materials

Arranging for breakfast, lunch, and/or break snacks

Distributing program materials

Greeting and assisting guests at your event (which might include things like moving chairs for people

who use wheelchairs).

Step Four: Choose a program date and establish a timeline.

Keep these things in mind when determining the time and date of your event:

Choose a date far enough in advance to give you ample time to prepare

Consult with your staff liaison and be aware of conflicting local and/or national events

Consider holidays and other busy times of the year for your attendees

9

Consider coordinating your event with a significant date or time of year, like MS Awareness Week or

Walk MS

Create a specific timeline:

Set realistic completion dates for accomplishing project tasks and goals. Reserve any services, technical

or other, that will be required for the event in advance (sound system, projector and screen for

pictures or videos, security, etc.)

Confirm venue, food, drink, services, speaker, etc. and that all contracts and agreements have been

signed and received by Society staff.

Step Five: Build a program budget.

In many cases, a program will require monetary funds for things like venue reservations, food or materials.

Anticipate these expenses and discuss them with your liaison to see if you might be able to access Society

funds or resources. Limited funding may be available from the Society. If pre-approved for funding, you may

be expected to pay for those expenses upfront and submit receipts and documentation to be reimbursed by

the Society.

When preparing your program budget, consider the following:

Estimate attendance, cost of decorations, refreshments, printing, mailing expenses, food/drink,

location, giveaways, supplies, etc.

Determine what items could be donated.

Consider significant up-front costs and deposits that may be required to reserve the location, caterer,

DJ or other service provider.

If funding is not available and your program can’t be done for free, your liaison can help you brainstorm ways to utilize other resources or plan alternative ways to pay a vendor. You should avoid having program attendees pay registration or admission fees to you or the Society directly.

Consider asking local businesses to provide in-kind donations or supplies at no cost or at a discounted rate. Keep in mind that a company will need plenty of lead time to process this request, so ask well before your event. Any donation request valued over $50 will need to be approved by your staff liaison. Before making any requests for in-kind donations, contact your staff liaison to check if the chapter has asked or is planning to ask the same business for a donation, so that your requests can be coordinated.

Here are some tips for soliciting donations: • Don't be too afraid to ask; remember that you're supporting a great cause. • Make sure to follow up with each potential sponsor with a professional proposal, phone call or visit. • Encourage committee members to recruit both sponsors and volunteers.

10

Step Six: Plan for program registration. If your program requires participants to register in advance, please consider the method most convenient to you for this process. You may want to consider having the Society handle registrations for you, in which case you should work with your staff liaison to complete this process. You may ask registrants to call or e-mail you in order to reserve space. Determine what information you will need to know from each registrant, like the number of people attending, the names of their guests and, if you’re serving food, whether they have any dietary restrictions. Information about how to RSVP for the program will be included in all program marketing. Be sure to communicate whether RSVP’ing is required or just encouraged and provide a registration deadline date. As you begin to accept registrations, consider the tracking method that will work best for you. This might include an Excel spreadsheet or a basic list of names. If your program has limited space, start a waitlist if it has reached capacity. Should anyone cancel in advance, you will then have the opportunity to register additional interested parties. Keep in mind that even though people have registered, they may not show up. The Society often estimates the no-show rate for programs to be around 20%. However, this number varies depending on the nature of the program so you may have more or less. Step Seven: Identify a location and assess venue accessibility.

Select a venue that will help you meet your goals and objectives, is within your budget and will provide the

atmosphere you’re looking for.

Tap into the networks of your committees or volunteers for recommendations.

Explore opportunities to get facility fees fully or partially donated.

If appropriate for your specific event, contact local Lions Club, American Legion, town halls, galleries,

schools and churches for large spaces that may be available at little or no cost.

Book the venue as far in advance as possible to reserve your desired date.

If there are contracts to be signed, be sure you work with your staff liaison on this. Only Society staff

can enter into contractual agreements.

Remember that outdoor venues can become expensive if additional lighting, tents, barricades,

portable toilets, etc. are required.

Make sure to inquire about any restrictions on occupancy limits, bringing in outside food/drink, sound,

decorations, etc.

Ensure the location is accessible and sufficient accessible parking is available and they carry liability

insurance.

The location must meet the Society’s accessibility standards and your staff liaison can guide you

through those.

11

When contacting a venue, here are a few key questions to ask:

Does your establishment offer private party rooms, or would you be willing to reserve a section or a

few tables for our group?

Are there any fees or costs associated with reserving private rooms?

Is there a minimum dollar amount that must be spent on food/beverages?

Would you be willing to donate a few appetizers for our group? Or offer a discounted rate?

Do you have a special group catering menu that you’d like us to order from ahead of time, or can we

just order from the regular menu on the day of the event?

Does the facility meet Society accessibility standards? Your staff liaison can guide you through our

accessibility standards.

Would you be willing to post fliers/signs in your establishment 7 to 10 days prior to the event to

advertise our gathering?

Other important tips:

Record the name of the person you spoke to and any other specific contact information for that person

(i.e. email address, cell phone number).

After you have set up your group event, be sure to call the venue/establishment at least 2 to 3 days

before the event to confirm your group is still on their schedule, and review any other last-minute

details (such as confirming the food count, if applicable).

Analyze potential safety and security hazards, and create a plan to help eliminate any risk.

Create a weather contingency plan if the event is outside. What will happen if inclement weather

strikes?

Step 8: Market your program or event. There are a variety of ways to let people know about your program, from fliers and brochures to email and Facebook. Be sure to utilize all available avenues to promote your event.

Create your guest list

Send out save the date materials

Please discuss your marketing strategy with your staff liaison. Marketing staff will help determine the appropriate materials for promotion based on the type of program, its size and location. Given the proper amount of lead time*, marketing staff may be able to help you create:

A program flier (request to be made a minimum of one month before sending/distributing)

An email or mailing to targeted list using Society database, to include possible inclusion in existing

chapter print materials and e-communications (request to be made a minimum of one month before

sending)

A Facebook post on the chapter’s general page (request to be made a minimum of one month in

advance)

Placement on the chapter’s website programs calendar (request to be made a minimum of one month

in advance)

12

*The lead time required to get the materials created may be longer than you expect. Make sure you ask about

a reasonable timeline.

Step Nine: Deliver your program or event.

Day of Program Activities

Think about materials that might be helpful for attendees (an agenda, speaker handouts, nametags, etc.) and

how many you’ll need. You may also want to display materials (such as educational brochures or chapter

information) from the National MS Society. Please contact your staff liaison to request the materials that

would be best suited for your event and to coordinate delivery. Society produced materials are available to

you at no cost.

Things to consider as you prepare for the start of your program:

Schedule a meeting with your planning team volunteers well in advance of attendees’ arrival.

Communicate any last-minute changes or additions to your volunteers and identify and troubleshoot

problem areas.

Ensure event will run on time and that all speakers have arrived and understand their role for the

event.

Identify a designated volunteer whom you trust and can be relied upon to make good decisions to

troubleshoot any problems or answer any questions that other volunteers may have.

Make sure to greet your guests. Let the volunteers focus on their roles while you thank guests for

attending and encourage them to participate in the event’s activities.

Check in When setting up, be sure the check-in location is both visible and accessible. Good on-site signage is important. Depending on the size of your event, you may want several volunteers available to run it. At check-in, you’ll need to mark off attendees as they arrive and distribute nametags (when applicable), as well as any materials they may need for the program. If a person checks in at your event but has not registered, you may have them fill out an on-site registration form (assuming you have the space to accommodate them).

A/V On the day of your program, be sure to test A/V equipment early to ensure everything is working properly before your program begins. This might include a laptop, a microphone or a projector.

Room Setup A variety of room setups can be used for your program, depending on the size of your audience, the nature of the event and the size of your room. Remember to include in your count any speakers, staff and volunteers who may be attending. For smaller audiences (up to 20 people), you may want to use a U-shaped table. For

13

larger audiences, you may want to use crescent seating (5 to 6 people seated around a section of an 8 or 10 foot round table) or classroom seating. Determine if you’ll need a podium or a table for a video projector, if applicable. Decide where the program laptop computer will be placed. To reduce listener fatigue, use a microphone for groups larger than 30 or if the room is large.

Confidentiality During the program, attendees may share personal information and feelings. In order to respect the private and personal nature of this information, the Society has adopted the following confidentiality policy. Each volunteer and employee of the National MS Society has an obligation to safeguard the confidentiality of personal information and shall not disclose in an individually identifiable way any information about a particular person without the person’s expressed authorization. When delivering a program, remember what is said at the program stays there. Depending on the program, it may be important to remind your participants to respect the same policy. Our confidentiality policy also means that we’re not able to send information about the Society to a person at someone else’s request. For example, if a man asks you to send a brochure to his sister who has MS, you must politely decline but encourage him to pass it along himself. You may also suggest that he and/or his sister contact an MS Navigator at 1-800-344-4867 for assistance with any questions they may have.

Please note, sign in sheets should be made optional at the program event to protect each individual’s privacy. Sharing program registration lists with your staff liaison is not a violation of the Society’s confidentiality policy because the staff liaison is bound by the same confidentiality policy. Evaluation Surveys are available for program participants to fill out after participating in a program. The volunteer is required to administer these surveys to people attending their program. Volunteers will complete a separate survey about their experience coordinating the program. See appendix H. Information from the program participant survey will:

Help us clarify our program outcomes and indicators of success

Help with decision making about which programs to continue, prioritize and expand

Help guide future volunteers

Help evaluate the volunteer (planning, communication, representing the Society, talking points)

Give us a comprehensive understanding of who our constituents are and what is important to them

Be shared with funders and Society staff

Help us evaluate if programs align with the Society’s strategic plan

Help us identify what we should or should not be doing Information from the Community Connections Volunteer survey will:

Help us improve this handbook

Be shared with Society staff and other volunteers

Identify best practices, successes and areas for improvement

Help determine if the Community Connections Volunteer position is sustainable

14

Help expand our reach (reaching more participants, increasing number of volunteers, expanding area covered, attracting new participants and volunteers)

Lead to improved cost-effectiveness of program delivery Upon administering surveys to your program attendees, please collect them in an envelope. Review them privately and send them to your staff liaison, along with your completed survey as well. Your staff liaison or another volunteer will compile and analyze the results.

15

Program Planning Resources

Appendix A-- Program Proposal Form

Program Proposal Form **Please submit form to your staff liaison after your initial planning conversation**

Name of Program Organizer: ________________________________________________ Program Organizer Phone: _______________Other Phone: ________________________ Email: ___________________________________________________________________ Date of Event: ___________________Time: Start_____________End________________ Location of Event: _________________________________________________________ Address: _________________________________________________________________ Describe the event (i.e.: educational program, social activity, etc.) ________________________________________________________________________ ________________________________________________________________________ ________________________________________________________________________ Please describe the expected outcomes of the event: Are there associated costs to attending this event? ____ No ____ Yes: Individuals responsible for their own food/beverage purchases ____ Other: ______________________________________________________________ ________________________________________________________________________ Is an RSVP required to attend? ____ No ____ Not required but preferred ____ Yes: RSVP deadline? ___________ RSVP to: _______Event Organizer ____ Other: ___________________________ Phone: _____________________________Email: ___________________________ Please describe any other information you’d like people to know about this event: _____________________________________________________________________

_____________________________________________________________________

Return completed form to: Staff Liaison: ________________________ Chapter: ___________________________ Address: ____________________________ City, State, Zip Code: __________________

16

Appendix B- Sample Timeline

Program Planning Timeline

Proposed weeks out Tasks

12 or more Submit the program proposal form.

Schedule time with staff liaison to discuss your proposed program.

Establish a date.

11 or more Identify and confirm appropriate meeting site.

Identify and begin to solicit in-kind donations (as needed).

Identify speakers (as needed).

Send speaker program details: date, time, location, etc.

Inform speaker of program objective and topics.

Request a short speaker bio for a program agenda.

10 Submit marketing request to staff liaison.

Determine target audience that should receive marketing materials about this event, including the “who and how far.”

Request or create a program brochure or flier.

Request listing for the online programs calendar.

Develop content for and request email announcement to target audience.

8 Generate your own list of contacts from your network to send marketing materials.

Send email to your personal and professional networks, to include healthcare professionals.

Request education materials from chapter to have available at your program.

6 Print and distribute program fliers to other volunteers, friends and family, and local healthcare professionals.

3 Produce and print agendas for the program. (as needed)

Confirm speaker(s) for the program. (as needed)

Confirm registered attendees with chapter liaison.

Prepare onsite materials (name tags, information table, signage, etc.).

DAY OF PROGRAM

Facilitate evaluation onsite and/or email surveys to attendees after the event (+1 week).

+1 Send thank you letter/email to speakers, in-kind donors, other volunteers.

+2 Compile and submit any hard copy surveys from program evaluation and send to staff liaison.

17

Appendix C: Programs-in-a-Box Available for You to Use

The National MS Society has produced a variety of program-in-a-box toolkits you may wish to consider delivering in your community. These toolkits include facilitator guides, participant handouts and other reference materials (such as DVDs), and are available at no cost to you. Your staff liaison can provide you with the materials. Available toolkits include: Live Fully, Live Well A wellness program for people with MS and their support partners

Topics covered in the Live Fully, Live Well program include:

Attending to Your Whole Self

Maximize Mobility, Achieve Independence

Tips for Managing Fatigue

Travel and Recreation for People Living with MS

Planning for Your Future (Finances and Careers)

Exercise Can Be a Part of Your Life with MS

Eating Well, Eating Easy Employment Matters

Topics covered in the Employment Matters: Managing MS in the Workplace toolkit include:

Thinking Proactively About Employment

Recent Changes to the Americans with Disabilities Act (ADA)

Disclosure in the Workplace

Managing Fatigue in the Workplace

Managing Cognitive Challenges in the Workplace

Assistive Technology and the Workplace

Everyday Matters: Living Your Best Life with MS Explore the use of the principles of positive psychology to address the everyday challenges of living with MS.

North American Education Program (research and/or symptom management)

Mood and Cognition in MS: What You Can Do (2014)

Making treatment and lifestyle decisions: thinking about benefits and risks (2013)

Pain and Sleep in MS (2012)

Working for me: research in understanding and treating progressive multiple sclerosis (2011)

To view these toolkits go to www.nationalMSsociety.org/connectionprogramvolunteers

18

Appendix D: Other Opportunities to Get Engaged

Social, support or self-help group. This requires an ongoing commitment to oversee and regularly plan and host group meetings for a group of interested people in your community.

Contact your staff liaison to get started. More information available at: www.nationalmssociety.org/connectionprogramvolunteers

Plan an advocacy activity such as a day at the capital or visiting a local representative. This could be a one-time event or an ongoing activity.

Advocacy Toolkit www.nationalMSsociety.org/connectionprogramvolunteers

Raise funds for MS awareness, research or the National MS Society’s programs and services.

Ask your staff liaison about the “Do-It-Yourself Fundraising Guide.”

Facilitate outreach to an organization in your community such as a community center, health fair or assisted living facility.

Ask your staff liaison about the “Community Outreach Toolkit.”

Attend a local health fair/expo and promote awareness of MS and the National MS Society

Ask your staff liaison about becoming an “MS Ambassador.”

19

Appendix E: MS and the National MS Society

What is multiple sclerosis?

Multiple sclerosis, an unpredictable, often disabling disease of the central nervous system, interrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men diagnosed with the disease. MS affects more than 2.3 million people worldwide.

What is the National MS Society?

The National MS Society addresses the challenges of each person affected by multiple sclerosis. To fulfill this mission, the Society funds cutting-edge research, drives change through advocacy, facilitates professional education, collaborates with MS organizations around the world, and provides programs and services designed to help people with MS and their families move their lives forward. www.nationalMSsociety.org

Appendix F: Disability etiquette: The language of disability and MS Since a person’s disability is only one of many attributes, it’s important to avoid terms that confuse the person’s disability with his or her identity as an individual. The National MS Society aims to portray people with MS respectfully. The best way to describe people with disabilities is just that way — “people with disabilities.” Words and phrases to use

Use the words “person with MS,” “program participant” or “person I am supporting” rather than “patient” or “client.”

Use the word “disability” rather than “handicap.”

Avoid using the term “disabled” as a noun or adjective. Instead of saying “the disabled” or “disabled

person,” use the phrase “person with a disability.”

Refer to someone as a person first. Replace phrases like “she is an MSer” with “she has multiple

sclerosis.”

Don’t refer to people without disabilities as “normal people.” The language we use reflects our

underlying attitudes. Therefore, it’s important to avoid any words or terms that might convey

disrespect, pity, hopelessness or stereotypical images of disability.

Words and phrases to avoid

“Wheelchair bound” or “confined/restricted to a wheelchair”— conveys the message that the mobility

device is a prison or trap rather than a useful tool of empowerment. A person uses a wheelchair to

enhance mobility.

“Afflicted with” — sounds negative and suggests hopelessness.

20

“Victim” — suggests people targeted by an uncontrollable force or agent, and implies helplessness and

a pitiful, passive state.

“Crippled” — conveys a pathetic image of a person who is unable to contribute to society.

“Gimp” — an out-of-date word once used to describe someone with a limp. It’s an insulting and

inappropriate put-down.

“Invalid” — conveys a hopeless state of permanent sickness.

“Poor/pitiful/unfortunate” — all terms that suggest a person who is unsuccessful, worthless, unable to

contribute to society.

“Sufferer”—implies a pitiful person who is always in pain or distress. While some people with

disabilities experience distress or pain, they are generally not experiencing either one of these all of

the time.

Appendix G: Handling challenging situations While leading a program, you may encounter challenging situations presented by those in attendance. First and foremost, the MS Society wants you to know we’re here for you. When you’re dealing with challenging situations, you can and should follow-up with your staff liaison. Handling crisis situations

Call 911 immediately in any case of life-threatening illness or injury.

Call your staff liaison immediately. He/she will have the appropriate incident report forms to complete

and will instruct you of the process.

Do not speak to any media contacts that approach you with questions. Your staff liaison will refer all

media inquiries to the Society’s Marketing and PR Director.

21

Appendix H: Sample Outcome Survey PROGRAM OUTCOME SURVEY

In an effort to make future programs as valuable as possible, we invite your opinion about the program you

recently attended. Please return this survey at the end of this program or mail to:

National MS Society

Connection Programs

900 S. Broadway, Ste 200

Denver, CO 80209

1. What is your relationship to MS?

a. Person with MS d. Healthcare provider

b. Spouse/Partner f. Other, please describe

c. Family member/friend

2. Approximately how long have you (or the person you care about) been diagnosed with MS?

a. Less than two years c. 6-10 years

b. 2–5 years d. More than 10 years

3. What type of MS have you (or the person you care about) been diagnosed with?

a. Relapsing Remitting c. Primary Progressive

b. Secondary Progressive d. Primary Relapsing

4. Age:

5. Gender: Female Male

6. What type of program did you attend?

a. Educational Program c. Fundraising Event

b. Social Event d. Other

7. City/State:

8. In what way do you think this program might impact your life?

9. Please tell us about the leader of this program and any suggestions you would make to them:

9. Additional comments or suggestions on this program:

10. What topics would be of interest for future programs?

22

11. Was this the first program you’ve attended from the National MS Society?

12. Would you like someone from the National MS Society to follow up with you?

13. If so, please enter contact information below: