Template Materials for Myelofibrosis Awareness Events

Template Materials for Myelofibrosis Awareness Events

Template Materials for Educational Forum 1.1 Sample forum goals and agenda 1.2 Sample invitation to health care provider about speaking at the educational forum 1.3 Sample press release 1.4 Notice for newspaper, web, email listings, community postings 1.5 Speaker briefing 1.6 National and Local Resources Fact Sheet 1.7 Evaluation Form 2

1.1 Sample forum goals and agenda 3

Empower through Knowledge: Learn about Myelofibrosis Forum Goals Educate the community, patients and caregivers with the most up to date information about MF Relate the experience of living with MF Offer a forum for individuals to have the opportunity to network and ask questions of a local expert Agenda Empower through Knowledge: Learn about Myelofibrosis 0:00 Welcome, Introductions Meeting organizer/host 0:10 What is Myelofibrosis? Medical expert 0:25 Treating Myelofibrosis and its Symptoms Medical expert 0:40 Living with Myelofibrosis Patient 1:00 Caring for a Person with Myelofibrosis Carer or family member 1:20 Moderated Q&A Panel All speakers 1:40 Closing Remarks, Networking Opportunity Begins Meeting organizer/host 2:15 Event ends 4

1.2 Sample invitation to health care provider about speaking at the educational forum 5

<Health care provider name> <Address> <Date> Dear <title, name>: I am writing to request that you speak at an upcoming educational forum for the community on myelofibrosis (MF) in honor of the first Myelofibrosis Awareness Day. This year s awareness day theme is to empower patients with education, to encourage them to be partners in their health care, and to help them find strength in association with other patients. Volunteers from across the country are working hard to promote these themes through similar events. We are inviting you to speak about the following topics: <list topic ideas> We will also have on the agenda a patient and caregiver who will speak about What is it like to live with myelofibrosis? What is it like to provide care and support for people with myelofibrosis? I hope that you will agree to participate in this event. The date of the event <will be decided when all participants are identified and I can coordinate availability> OR < enter date>. We also hope you will promote the event and Myelofibrosis Awareness Day within your <clinic, practice, hospital> and share information about the educational forum with patients and caregivers. I will be contacting you by phone in the coming week to discuss this opportunity further. In the meantime, if you have questions, please contact me at <insert phone> or <insert email> Sincerely, <insert host organization signature text> 6

1.3 Sample press release 7

Myelofibrosis Awareness Day Educational Forum on <insert date> <date> <contact> For immediate release Please join <organization, location, date and time> for an educational forum Empower Through Knowledge: Learn About Myelofibrosis in observation of Myelofibrosis Awareness Day. Take this opportunity to learn more about myelofibrosis, what it is like to live with the condition, available treatment options and where to go for help if you or a loved one needs it. This important gathering will occur at <location> on <date> at <time>. Local medical expert <insert name> will be the featured speaker along with a patient and caregiver. Myelofibrosis is a rare, chronic, and progressive disorder of the blood and bone marrow that can cause an enlarged spleen, imbalance of blood cells and severe symptoms that lead to poor quality of life. Volunteers across the country are working hard to promote (date) as Myelofibrosis Awareness Day to improve the quality of life for people with myelofibrosis. Please help us to raise awareness For more information on myelofibrosis, call <insert organization name and number> or go to: The MPN Research Foundation The MPN Education Foundation CancerCare Cancer Support Community Leukemia & Lymphoma Society The National Organization for Rare Disorders 8

1.4 Notice for newspaper, web, email listings, community postings 9

Myelofibrosis Awareness Day Community Educational Forum Empower through Knowledge: Learn about Myelofibrosis <location> <date and time> Please join <enter organization, provider name> for an educational forum Empower Through Knowledge: Learn About Myelofibrosis in observation of Myelofibrosis Awareness Day. Take this opportunity to learn more about myelofibrosis, what it is like to live with the condition, available treatment options, and where to go for help if you or a loved one needs it. This important gathering will occur at <location> on <date> at <time>. Local medical expert <insert name> will be the featured speaker along with a patient and caregiver. Myelofibrosis is a rare, chronic, and progressive disorder of the blood and bone marrow that can cause an enlarged spleen, imbalance of blood cells and severe symptoms that lead to poor quality of life. Patients, caregivers and physicians will discuss myelofibrosis, living with the condition and treatment options. After the discussion, there will be refreshments and opportunity to network. For more information, contact <name> at <phone, email address> 10

1.5 Briefing speakers on their topics 11

Briefing speakers on their topics In choosing speakers, particularly for the patient and caregiver, interview them first to get a sense of how they will speak about their situation. Consider finding a patient and caregiver who are coping well with their situation and are able to talk about it naturally with limited emotions, and whose experience may be helpful to those in the audience who are grappling with similar problems. For the medical experts, it is important to find a doctor who can connect to the audience and impart the information in a factual, honest yet empathic manner and can speak to a lay audience. Conducting a speaker run through before the event is a good way to become aware of what speakers will say, how they say it, and have the opportunity to offer feedback. For Medical Expert: Topics: Defining myelofibrosis, treating MF and its symptoms Time allotted: 30 minutes Audience: Remarks should be prepared for an audience mixed with patients, caregivers and general public. While many patients may know a lot about the disease, it will be important to use patient-friendly language. Topics for consideration: Define MF, how it is diagnosed, who it is diagnosed by Discuss why it is classified as a cancer Offer information about the incidence and prevalence globally, nationally and locally Describe symptoms and disease course Explain current treatments based on course of disease Outline what treatments are available to relieve the symptom burden of the disease Update on newest treatments and ongoing research, clinical trials For Patient Speaker Topic: Living with myelofibrosis Time allotted: 20 minutes Audience: Remarks should be prepared for an audience mixed with patients, caregivers and general public. Your purpose will be to help them understand your experience in a manner that balances reality and offers inspiration to those who may be struggling. 12

Topics for consideration: How were you diagnosed, what led you to seek help How MF has impacted your quality of life What has been most challenging since your diagnosis What resources have been useful to you in your journey For CaregiverSpeaker Topic: Caring for someone with myelofibrosis Time allotted: 20 minutes Audience: Remarks should be prepared for an audience mixed with patients, caregivers and general public. Your purpose is to provide a real view of the caregiver role; its challenges and rewards. Topics for consideration: Your relationship to the person who is diagnosed What kinds of help have you had to or tried to provide What has been the most challenging aspect, the most rewarding What kind of support do you as a caregiver need and receive What advice would you give to other caregivers For Host Topic: Introduction, closing and moderating question and answer panel Topics to consider (introduction): First MF Awareness Day and goals of the event Why disease awareness is important Introduction of speakers Back up questions for panel (if audience does not ask questions): As a person living with MF, what do you think has been most helpful to you? As a caregiver, what resources have been most helpful? As a doctor, how do you keep up with all new information available about this and other diseases? Topics to consider (closing): Thank speakers, invite all to stay and network, ask for evaluation to be completed 13

1.6 National and Local Resources Fact Sheet 14

CancerCare 275 Seventh Avenue, Floor 22 New York, NY 10001 Phone: 1-800-813-HOPE Website: www.cancercare.org Mission: CancerCare provides free, professional support services to those affected by cancer. Services: Educational resources (including audio Connect program on MF) Emotional support o Counseling o Support groups (telephone, online, face to face in NYC, NJ, LI) o Community programs Financial aid o Co-pay assistance program o Cancer Financial Assistance Coalition (CFAC) referrals Cancer Support Community (CSC) 1050 17th St NW Washington, DC 20036 Phone: 1 202 659 9709 www.cancersupportcommunity.org Mission: CSC ensures that all people impacted by cancer are empowered by knowledge, strengthened by action and sustained by the community. Services: Educational resources (including Frankly Speaking about MF) Emotional support o Online support groups o Counseling o Family/caregiver workshops o Local support through affiliate and satellite locations Leukemia & Lymphoma Society 1311 Mamaroneck Avenue, Suite 310 White Plains, NY 10605 Phone: +1 800 955 4572 Website: www.leukemia-lymphoma.org Mission: LLS aims to cure leukemia, lymphoma, Hodgkin's disease and myeloma, and to improve the quality of life of patients and their families. Services: Educational resources (including MF fact sheet) 15

Information on clinical trials Emotional support o Peer-to-peer support groups o Family support groups o Live chats and discussion boards o Hotline Financial aid o Co-pay assistance program MPN Education Foundation P.O. Box 4758 Scottsdale, AZ 85261 Website: www.mpdinfo.org Mission: MPN Education Foundation provides MPN information and education in addition to supporting research Services: Educational resources Emotional support o Online support group MPN Research Foundation 3520 Lake Ave., Suite 202 Wilmette, IL 60091 Phone: 1 847 424 0600 Website: www.mpnfoundation.org Mission: MPN Research Foundation aims to stimulate original MPD research in pursuit of new treatments and eventually a cure for polycythemia vera, primary myelofibrosis and essential thrombocythemia. Services: Educational resources o Online information Video Brochure Emotional support o Support groups 16

National Organization for Rare Disorders (NORD) PO Box 1968 Danbury, CT 06813-1968 Phone: 1 203 744 0100 Website: www.rarediseases.org Mission: NORD serves as a federation of voluntary health organizations and individuals dedicated to helping people with rare orphan diseases and the organizations that serve them. Services: Educational resources o Rare disease database o Patient organization database Emotional support o Patient networking program o Online patient communities o Patient meetings Financial aid o Patient assistance programs o Cancer financial support referrals Patient Advocate Foundation 753 Thimble Shoals Blvd, Suite B Newport News, VA 23606 Phone: 1 800 532 5274 Website: www.patientadvocate.org Mission: PAF works to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability. Services: Educational resources o Online information o Hotline o Webinars Financial aid o Case management o Direct patient services o Co-pay relief program ADD LOCAL RESOURCES 17

1.7 Evaluation Form 18

Educational Forum Evaluation Form Thank you for participating in this educational forum We appreciate your taking a few moments to help us evaluate the meeting and plan future events. 1. What is myelofibrosis, treating MF and its symptoms Speaker: Disagree Agree a. This presentation was useful 1 2 3 4 5 b. The speaker was clear and knowledgeable 1 2 3 4 5 2. Living with myelofibrosis Speaker: Disagree Agree a. This presentation was useful 1 2 3 4 5 b. The speaker was clear and knowledgeable 1 2 3 4 5 3. Caring for someone with myelofibrosis Speaker: Disagree Agree a. This presentation was useful 1 2 3 4 5 b. The speaker was clear and knowledgeable 1 2 3 4 5 4. Panel discussion Facilitator: Disagree Agree a. This discussion was useful 1 2 3 4 5 b. The panel was well-facilitated 1 2 3 4 5 What sessions/content/speakers did you find most valuable? Please circle the most valuable sessions: 1 2 3 4 Why were they valuable? 19

What sessions/content/speakers did you find least valuable? Please circle the least valuable sessions: 1 2 3 4 Why were they not valuable? Would you be interested in attending more events related to MF? Yes No What information would you like to see included at future educational meetings? How did you hear about this event? What sources do you use to get information about MF or other health conditions (circle all that apply)? a. My doctor b. The internet c. Newspapers or other print publications d. Local hospital newsletters e. Friends and family f. Other (please describe ) Name (optional) 20

Sample Ideas for a Sustained Campaign 2.1 Sample campaign objectives 2.2 Sample campaign tactics and timeline 2.3 Sample key performance indicators to measure success 21

2.1 Sample campaign objectives 22

Sample campaign objectives Using the sample issue previously noted: Empowering patients with MF to get the best care and treatment available, the following objectives might be used: 1. Utilize knowledge about and include perspective of the patients and caregivers 2. Create greater awareness of the disease for individuals with MF, caregivers and healthcare providers 3. Increase patient s ability to access treatments for MF 23

2.2 Sample campaign tactics and timeline 24

Sample campaign tactics and timeline Tactics for the above objectives might be: Objective 1: Utilize knowledge about and include perspective of the patients and caregivers Design and implement a survey of patients and caregivers to understand their level of knowledge and what they believe are unmet needs Facilitate a focus group of patients and caregivers to review the results and comment in more depth Analyze survey results and use to develop a media story which includes a patient story Identify articulate patients and caregivers who can speak with media Provide media training for spokespersons Objective 2: Create greater awareness of the disease for individuals with MF, caregivers and health care providers Create key messages related to your objectives Offer and do initial mailing of co-branded My Life with Myelofibrosis brochure Develop an educational workshop series that might include the following topics o Basics of MF: What is the disease, how is it diagnosed and treated? o Quality of Life: How can you live well with this disease? o Talking to Your Doctor: General and MF specific best communication practices o Caregiver Forum: Getting what you need to maximize your ability to care o Community Resources: What is available locally and nationally to help you with practical, emotional and financial concerns? Engage a media partner for the campaign Invite other local organizations to join the campaign to increase the visibility Launch the campaign at a September 2012 MF Awareness Day event and continue activities through until September 2013 Develop web-based educational material, send monthly emails with new facts about MF to constituency and drive them to website, disseminate brochures Engage local politician or media personality to be a spokesperson for the campaign Host an educational seminar for primary care MDs and hematologists focusing on coordination of care across disciplines Re-survey same patients and caregivers after yearlong campaign Objective 3: Increase patient s ability to access the newest available treatments for MF Develop a biannual research newsletter that offers patient-friendly summaries of current clinical trials and new treatments 25

Offer treatment-decision counseling to support patients becoming partners in their health care decision making In collaboration with an MF medical expert, create a video about the current landscape of treatments and best practices in patient-doctor relationship Host a roundtable (see above step by step) Sample timeline (one year): A sustained campaign overtime shows more increase in awareness than one off events. Try and stagger your activities over a longer period of time to maximize their impact. For example Date August 2012 September 2012 October 2012 November 2012 December 2012 January 2013 February 2013 March 2013 April 2013 Potential Activity -Plan educational forum programs (see step by step in first section) -Create key messages for campaign -Identify campaign spokespersons (patient, caregiver, local MD, local celebrity, politician) -Determine if you wish to invite other partners to co-sponsor campaign -Develop media engagement plan -Use MF Awareness Day as a springboard to launch campaign with educational forum series host first of five forums and announce activities for the year-long campaign -Launch media engagement plan (includes measurement of media impressions and key messages -Plan for special web page or section on website -Host second educational forum -Review media report to make any adjustments in messages, plan -Launch MF web page/section -Send first email blast related to coping with MF around the holidays -Mail out My Life with Myelofibrosis brochure -Plan map out research newsletter plan and dates -Attend American Society of Hematology meeting or get relevant abstracts -Develop survey, plan focus group -Host third educational forum -Send out MF survey -Send monthly email fact on MF -Research newest treatments and research, engage medical writer for patient-friendly language -Analyze survey results -Host patient focus group -Host fourth educational forum -Publish first research newsletter -Send monthly email fact on MF -Host fifth educational forum -Develop report and media story on patient survey/focus group results; use patient spokesperson and engage media partner to publicize story -Send monthly email fact on MF -Develop materials on treatment-decision counseling -Develop plan for June roundtable event (see previous step by step) -Review media report to make any adjustments in messages, plan -Send monthly email fact on MF 26

May 2013 June 2013 July 2013 August 2013 September 2013 -Plan for research newsletter after a myelofibrosis related regional clinical or scientific hematology/oncology meeting -Plan for June roundtable event -Begin training of staff for treatment decision counseling -Send monthly email fact on MF -Attend a myelofibrosis related regional clinical or scientific hematology/oncology meeting and develop patient-friendly summaries of relevant research -Complete training of staff on treatment decision counseling -Host roundtable -Send monthly email fact on MF -Launch treatment decision counseling program for patients and caregivers -Plan video with medical expert on current treatments and Pt-MD relationship -Plan educational seminar for primary care MDs and hematologists -Send monthly email fact on MF -Record video with medical expert -Send invites for MD educational seminar -Re-survey original patient, caregivers from 2012 survey -Send monthly email fact on MF -Observe MF Awareness Day with launch of video and MD educational seminar -Analyze and report on results of year-long efforts 27

2.3 Sample key performance indicators to measure success 28

Sample key performance indicators to measure success By the end of the campaign you should have amassed a number of measurements that can assist you in understanding the impact including: Number of media impressions and number of key campaign messages media articles Evaluations from all events (see samples in other sections) Increase in number of contacts related to MF to the lead organization or center Number of web hits on MF webpage Numbers of brochures disseminated Number of calls to the treatment decision-making counseling program Number of views of video Post-campaign patient survey results 29

Forming a Myelofibrosis Team for Light the Night Walks 3.1 Notice/invitation to build a team 3.2 Sample fundraising letter/email 3.3 Sample press release 30

3.1 Notice/invitation to build a team 31

Help Raise Myelofibrosis Awareness! Friends and neighbors: We are assembling a myelofibrosis team for the local Leukemia & Lymphoma Society Light the Night walk. Each year, in communities all across the United States and Canada teams of families, friends, co-workers and local and national corporations come together to raise funds for The Leukemia & Lymphoma Society's (LLS) Light The Night Walk events to bring help and hope to people diagnosed with all blood cancers. We are participating to create awareness of myelofibrosis among these walkers and attending media. We will be identified as the <name of your community> Myelofibrosis Awareness team on the LLS website and by our Myelofibrosis Awareness t-shirts. This is an important opportunity for people with myelofibrosis, their caregivers and families, neighbors and friends to raise awareness about myelofibrosis and to support ourselves and our community. To join our team or for more information contact <name> at <phone> or <email> To help us reach our team s fundraising goals, please consider a tax deductible contribution. Checks should be made payable to the Leukemia & Lymphoma Society and all contributions should be directed to <name> <address>. You can also donate to our team through the Light the Night website by choosing Donate and entering my name <name> and our team name <team name> (http://www.lightthenight.org/) Thank you for your support! 32

3.2 Sample fundraising letter/email 33

Dear <insert name> This year marks the first ever Myelofibrosis (MF) Awareness Day. The goal of this first year is to empower patients with MF to learn about their disease, become partners in their health care decision making and to gain strength by connecting with others. You may not be aware of MF. MF is a rare, chronic, and progressive disorder of the blood and bone marrow that can cause an enlarged spleen, imbalance of blood cells and severe symptoms that lead to poor quality of life. Because it is rare, few health care providers have had the chance to diagnose a patient with myelofibrosis, have knowledge of disease or treatment. Accordingly, the time it takes for a diagnosis is a source of frustration for patients and families. <I was diagnosed/my family member was diagnosed with MF in xxx> <I provide care to people with MF>. To help increase awareness and inspire those with MF, <I/we> have created a team to walk for The Leukemia & Lymphoma Society's (LLS's) Light the Night Walk event. Funds generated from this event bring help and hope to people <like me/like my xx> battling blood cancers. Our team has a fundraising goal of <$xxx>. I hope you will support us in reaching this goal. Checks should be made payable to the Leukemia & Lymphoma Society and contributions can be directed to <name> <address>. You can also donate to our team through the Light the Night website by clicking on Donate and entering my name <name> and our team name <team name> Thank you for your support! 34

3.3 Sample press release 35

<date> <contact> For immediate release Myelofibrosis Awareness Day is <date> Local Community Team Walks in Light the Night for MF Awareness For the first time a team of individuals will walk for the local Leukemia & Lymphoma Society Light the Night walk to raise awareness for a rare blood cancer called myelofibrosis. Funds raised from this event will support The Leukemia & Lymphoma Society (LLS) to bring help and hope to people battling blood cancers like MF. To join the team or for more information contact <name> at <phone> or <email> Donations can be made to the MF team through the Light the Night website by choosing Donate and entering <name> and team name <team name>. MF is a rare, chronic, and progressive disorder of the blood and bone marrow that can cause an enlarged spleen, imbalance of blood cells and severe symptoms that lead to poor quality of life. Because it is rare, few health care providers have had the chance to diagnose a patient with myelofibrosis, have knowledge of disease or treatment. Accordingly, the time it takes for a diagnosis is a source of frustration for patients and families. We are walking along with others across the country to promote awareness about MF. Please help us to raise awareness locally by attending the walk or donating to our team. For more information on myelofibrosis, go to: The MPN Research Foundation The MPN Education Foundation CancerCare Cancer Support Community Leukemia & Lymphoma Society The National Organization for Rare Disorders 36

Other Template Materials 4.1 Sample letter to the editor 4.2 Sample newsletter/blog article 37

4.1 Sample letter to the editor 38

To the Editor <Date> Re: <Date> is Myelofibrosis Awareness Day With all of the news about health care reform and policies, we can sometimes lose sight of individuals who are struggling day in and day out with health concerns. In particular, individuals with rare diseases, with diseases whose names are not recognizable and who affect small numbers of patients, can be particularly lost in the system. This month volunteers across the country, including here in <location> are working hard to promote <date> as the first Myelofibrosis Awareness Day. The theme this inaugural year is to empower patients with MF with knowledge so they can participate actively in getting the best care and treatment. MF is a rare, chronic, and progressive disorder of the blood and bone marrow that can cause an enlarged spleen, imbalance of blood cells and severe symptoms that lead to poor quality of life. Because it is rare, few health care providers have had the chance to diagnose a patient with myelofibrosis, have knowledge of disease or treatment. Debilitating yet treatable symptoms, including abdominal discomfort, early feeling of fullness, pain under the left rib, itching, night sweats, bone/muscle pain, are often underreported by patients. As a <person with> <caregiver for a person living with> <health care provider for patients with> myelofibrosis, I hope that Myelofibrosis Awareness Day will help to achieve this important goal. Sincerely, <insert signature text> 39

4.2 Sample newsletter/blog article 40

I am a <person with> <caregiver for a person living with> < health care provider for patients with> myelofibrosis. I am working alongside other volunteers across the country to promote <date> as Myelofibrosis Awareness Day. These efforts will improve the quality of life for people with myelofibrosis by increasing the awareness of the disorder among the public, media, government, and medical communities. MF is a rare, chronic, and progressive disorder of the blood and bone marrow that can cause an enlarged spleen, imbalance of blood cells and severe symptoms that lead to poor quality of life. Because it is rare, few health care providers have had the chance to diagnose a patient with myelofibrosis, have knowledge of disease or treatment. One of the most serious parts of this disease are debilitating yet treatable symptoms, including abdominal discomfort, early feeling of fullness, pain under the left rib, itching, night sweats, bone/muscle pain, that are often underreported by patients. <Tell personal story in one to two paragraphs illustrating why it is important to care about myelofibrosis.> In support of Myelofibrosis day we are < enter event> at< provide event details> <If you are working to get a city or state declaration for Myelofibrosis Awareness Day, provide the details of who you are working with [mayor, governor, state legislature/city council] and how that effort is going. You may also ask people to call your contact to support the proclamation effort.> For more information on myelofibrosis, go to: The MPN Research Foundation The MPN Education Foundation CancerCare Cancer Support Community Leukemia & Lymphoma Society The National Organization for Rare Disorders 41