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How to be an Advocate

How to Advocate for Lymphedema

For more complete and expanded information please see:

Lymphedema Advocacy

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_advocacy

Pat O'Connor

May 20, 2008

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What is lobbying?

Lobbying can easily be defined as the fine art of causing or persuading another to undertake a course of action on behalf of and in support of an issue of concern to you.

Lobbying is hard work that often requires many hours of preparation and research.

We absoslutely must educate ourselves in how to lobby, what is an advocate and where do we lobby.  It is my dream that all the various lymphedema organizations can one day lay aside their own specific interests to join together in a broad based coalition for the lobbying of this terrible condition.

I's always reminded of that statement  "United we stand, divided we fall," and of another  "the people perish without a vision."  Sadly, we patients have the vision and understand the need, now if the organizations can only have the same shared dream and vision.

Pat

Dec. 28, 2011

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What lobbying is not

Lobbying is not a show you put on to become a star or the center of attention. If you are lobbying for lymphedema, you must stay focused on that specific topic. If you allow yourself to wander
and ramble you will loose your audience's attention.

Remember, whether in writing or speaking stay focused.

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Two pillars of successful lobbying

The first pillar is Education

Since most doctors know little about lymphedema, we can safely conclude that the group we are lobbying to is unfamiliar with it as well. Therefore, we must first educate them about the condition.

You must be educated on the condition as well. You must present facts that are verifiable and that is based on solid evidence. If you do not know your facts or if you half-facts or
non-facts, you will never gain credibility. I can not stress enough how important credibility is in lobbying.

So, you must do your homework diligently.

The second pillar is making your info go from the brain to the heart.

If you are not able to bring your point to your audience's heart all your education becomes simply an academic exercise. Remember, change rarely, if ever takes place simply because of facts. Your audience must be able to feel your pain and to identify with you in it and in your struggle.

These two go hand in hand, and in a well thought out synthesis they bring amazing results.

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This may seem redundant to some, but there are a few points to speaking to a group.

1. Do not simply read a script from a paper.

2. Know and memorize your speech well enough that all you have to use is an outline.

3. Make and keep eye contact with your audience Nothing keeps a person's attention like causing them to feel you are speaking directly to them.

4. Make sure you have studied your topic well enough so that if there is a question and answer period following, you do not falter
or give simplistic glib answers to serious questions.

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For further study:

Patient Advocate Foundation

Our Mission Statement

Patient Advocate Foundation is a national non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis through case managers, doctors and attorneys. Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.

http://www.patientadvocate.org/

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Building Coalitions

In addition to your own personal political activity, it is at times also necessary to build coalitions with other community groups and organizations. The following is a checklist for coalition building:

Step. 1: Compile a list of local organizations likely to join forces with the NVFC on a particular issue.  An attempt should be made to balance the list with representatives from varied organizations: religious, civil rights, minority, women's, consumers, public interest and community service groups.

Step 2: Develop a list of well-known individuals who generally support fire services issues, i.e. radio-TV personalities, state legislators, lawyers, "good" business leaders, civic and religious leaders, law enforcement groups, etc. 

Step 3: Contact these individuals and organizations and ask them to join in endorsing a statement of principles as a first step. Send a copy of the statement with a cover letter inviting their paarticipation should be mailed and followed up by a phone call

Step 4: Develop a steering committee of six to 10 people. They should meet and be provided with a list of possible activities for their organizations and the other members of the coalition.  The advice of the steering committee should be solicited. 

Step 5: Be specific in the kind of action requested of each group. For example, they should be provided with a sample resolution to consider.  Once the resolution is passed, the colunteer should make sure that it gets sent to the appropriate elected officials and the loca news media. 

Step 6: Keep in touch with the colation participants, share information with them, and call and meet with them occasionally. They should be asked to complete specific tasks.  For example, each organization should be asked to send 50 letters to their Representative and Senators, generate 25 telephone calls, represent the coalition on radio programs, write letters to the editors etc. 

Step 7: Issue news releases periodically about the activities, and work of the coalition to the local newspapers, radio and TV stations.

Step 8: Notify the NVFC'S National Office of the coalition's activites and planned events. Assistance is available from the NVFC. Semd copies of correspondance to Congress to the NVFC's  National Office.  

Beside building long-term coalitions, it is also possible to develop short-term coalitions that revolve around a single issue. 

For further information, please seeL

Grassroots Lobbying Techniques

http://www.nvfc.org/resources/legislativeaffairs/take-action/grassroots-lobbying-techniques/

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How to Be an Advocate 

We all have a passion or  cause that we care about. Being an advocate for that cause is always the right thing to do.  Have your voice heard.  Help those who cannot help themselves.

  • Decide on a topic you wish to advocate. Make this something you are truly passionate about.

  • Research the topic you are passionate about. Advocacy starts with knowledge. Learn everything you can to be well informed about your cause.

  • Find other groups that advocate for the same things you do. Do an online search for advocacy message boards or meet groups that have the same passion as you. Join these groups and stay involved. Having a support system is essential for an advocate.

  • Get your information out there. Arrange meetings, seminars and rallies to help your cause. Involve the community by sending out mailings, canvassing your area with fliers and handing out brochures at your local hangouts or heavily trafficked areas. The more people that know, the better turnout you will have.

  • Write letters to the newspaper, Congressmen and organizations in your area to help support your cause. Both the websites for the U.S. House of Representatives and the National Write Your Congressman have ways to write in and have your voice heard.

  • Use bumper stickers, buttons, badges or window stickers to share your views with passers-by. Advocacy requires support and these things help get support. Websites like Customized Stickers and Logo-It have ways to get customized information at an affordable price.

  • Read more: How to Be an Advocate | eHow.com http://www.ehow.com/how_2070151_be-advocate.html#ixzz1hqDKmFxk

    http://www.ehow.com/how_2070151_be-advocate.html

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    The Democracy Center

    Lobbying - The Basics

    http://www.democracyctr.org/publications/manual/curricula/doc6.htm

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    General Tips for Working with Legislators

    Your legislator's time is valuable, but he or she appreciates constituent contacts. Here are some ideas for how to most effectively develop on ongoing relationship with your legislator while advocating on behalf of libraries. By the way, these tips work for meeting with any elected official.

    http://www.wla.lib.wi.us/legis/legisgeneraltips.htm

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    What Is Lobbying?

    What is Lobbying, Contacting Your Legislator, Effective Grassroots Lobbying, Ten Worst Mistakes of Lobbying

    http://www.vilaw.com/files/WHAT_IS_LOBBYING.pdf

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    Grassroots Lobbying Techniques

    If we want our Representatives to do their job and support our views, we must do our job as grassroots lobbyist. This means educating our members of Congress about the issues that affect us, our jobs, our families.There are four methods available to us, that can make us effective grassroots lobbyists: e-mail, letter writing, phone calls, and meetings. We will need to choose the method which best suits the legislative situation at hand.

    http://www.nvfc.org/resources/legislativeaffairs/take-action/grassroots-lobbying-techniques/

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    Lobbying Resources

    Good site with much info on how to lobby, techniques, additional links

    http://www.heartsandminds.org/links/lobbylinks.htm

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    A Citizen's Guide Advocacy

    One does not need to be an expert to be a citizen advocate, but some basic information, in addition to the issues that concern you, is helpful. You should know a few important details about your senators and representatives, such as what committees they serve on, any voting record supporting or opposing foreign assistance, public statements, and so forth.

    http://www.worldvision.org/resources.nsf/main/advocacy-handbook.pdf/$file/advocacy-handbook.pdf

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    Join us as we work for lymphedema patients everywehere:

    Advocates for Lymphedema

    Dedicated to be an advocacy group for lymphedema patients. Working towards education, legal reform, changing insurance practices, promoting research, reaching for a cure.

    http://health.groups.yahoo.com/group/AdvocatesforLymphedema/

    Subscribe: AdvocatesforLymphedema-subscribe@yahoogroups.com

    Pat O'Connor

    Lymphedema People / Advocates for Lymphedema

    Group Focus

    1. Identification of and utilization of local/county resources in getting the word out about lymphedema. These resources include local media (TV, radio, publications).

    2. Lobbying of state legislators in our own district pushing for enactments of lymphedema treatment laws and regulations (Bob's legislative packet).

    3. Identification and lobbying of state-wide legislators who are sympathetic to/or supportive of health issues.

    4. Working at the Federal level as well in the same identification and lobbying process.

    5. Explore possibilities of coalition building (i.e. cancer survivor groups, rare disorder societies etc) in our efforts.

    6. How do we work for changes within the medical establishment to get lymphedema recognized as a certified medical sub-specialty.

    7. Central location where we can be kept abreast of actions and events state by state and national that affect any aspect of LE.

    Your input and involvment is crucial to the success of our efforts and I welcome any and all input you might have, concerns, areas of expertise and areas that you might want to volunteer to work in.

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    For information about Lymphedema

    http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema\

    For Information about Lymphedema Complications

    http://www.lymphedemapeople.com/wiki/doku.php?id=complications_of_lymphedema

    For Lymphedema Personal Stories

    http://www.lymphedemapeople.com/phpBB2/viewforum.php?f=3

    For information about How to Treat a Lymphedema Wound

    http://www.lymphedemapeople.com/wiki/doku.php?id=how_to_treat_a_lymphedema_wound

    For information about Lymphedema Treatment 

    http://www.lymphedemapeople.com/wiki/doku.php?id=treatment

    For information about Exercises for Lymphedema 

    http://www.lymphedemapeople.com/wiki/doku.php?id=exercises_for_lymphedema

    For information on Infections Associated with Lymphedema

    http://www.lymphedemapeople.com/wiki/doku.php?id=infections_associated_with_lymphedema

    For information on Lymphedema in Children

    http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_in_children

    Lymphedema Glossary

    http://www.lymphedemapeople.com/wiki/doku.php?id=glossary:listing

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    Lymphedema People - Support Groups

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    Children with Lymphedema

    The time has come for families, parents, caregivers to have a support group of their own. Support group for parents, families and caregivers of chilren with lymphedema. Sharing information on coping, diagnosis, treatment and prognosis. Sponsored by Lymphedema People.

    http://health.groups.yahoo.com/group/childrenwithlymphedema/

    Subscribe: childrenwithlymphedema-subscribe@yahoogroups.com

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    Lipedema Lipodema Lipoedema

    No matter how you spell it, this is another very little understood and totally frustrating conditions out there. This will be a support group for those suffering with lipedema/lipodema. A place for information, sharing experiences, exploring treatment options and coping.

    Come join, be a part of the family!

    http://health.groups.yahoo.com/group/lipedema_lipodema_lipoedema/?yguid=209645515

    Subscribe: lipedema_lipodema_lipoedema-subscribe@yahoogroups.com

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    MEN WITH LYMPHEDEMA

    If you are a man with lymphedema; a man with a loved one with lymphedema who you are trying to help and understand come join us and discover what it is to be the master instead of the sufferer of lymphedema.

    http://health.groups.yahoo.com/group/menwithlymphedema/

    Subscribe: menwithlymphedema-subscribe@yahoogroups.com

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    All About Lymphangiectasia

    Support group for parents, patients, children who suffer from all forms of lymphangiectasia. This condition is caused by dilation of the lymphatics. It can affect the intestinal tract, lungs and other critical body areas.

    http://health.groups.yahoo.com/group/allaboutlymphangiectasia/

    Subscribe: allaboutlymphangiectasia-subscribe@yahoogroups.com

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    Lymphatic Disorders Support Group @ Yahoo Groups

    While we have a number of support groups for lymphedema... there is nothing out there for other lymphatic disorders. Because we have one of the most comprehensive information sites on all lymphatic disorders, I thought perhaps, it is time that one be offered.

    DISCRIPTION

    Information and support for rare and unusual disorders affecting the lymph system. Includes lymphangiomas, lymphatic malformations, telangiectasia, hennekam's syndrome, distichiasis, Figueroa
    syndrome, ptosis syndrome, plus many more. Extensive database of information available through sister site Lymphedema People.

    http://health.groups.yahoo.com/group/lymphaticdisorders/

    Subscribe: lymphaticdisorders-subscribe@yahoogroups.com

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    Lymphedema People New Wiki Pages

    Have you seen our new “Wiki” pages yet?  Listed below are just a sample of the more than 140 pages now listed in our Wiki section. We are also working on hundred more.  Come and take a stroll! 

    Lymphedema Glossary 

    http://www.lymphedemapeople.com/wiki/doku.php?id=glossary:listing 

    Lymphedema 

    http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema 

    Arm Lymphedema  

    http://www.lymphedemapeople.com/wiki/doku.php?id=arm_lymphedema 

    Leg Lymphedema 

    http://www.lymphedemapeople.com/wiki/doku.php?id=leg_lymphedema 

    Acute Lymphedema 

    http://www.lymphedemapeople.com/wiki/doku.php?id=acute_lymphedema 

    The Lymphedema Diet 

    http://www.lymphedemapeople.com/wiki/doku.php?id=the_lymphedema_diet 

    Exercises for Lymphedema  

    http://www.lymphedemapeople.com/wiki/doku.php?id=exercises_for_lymphedema 

    Diuretics are not for Lymphedema 

    http://www.lymphedemapeople.com/wiki/doku.php?id=diuretics_are_not_for_lymphedema 

    Lymphedema People Online Support Groups 

    http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_people_online_support_groups 

    Lipedema 

    http://www.lymphedemapeople.com/wiki/doku.php?id=lipedema 

    Treatment 

    http://www.lymphedemapeople.com/wiki/doku.php?id=treatment 

    Lymphedema and Pain Management 

    http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_and_pain_management 

    Manual Lymphatic Drainage (MLD) and Complex Decongestive Therapy (CDT)

    http://www.lymphedemapeople.com/wiki/doku.php?id=manual_lymphatic_drainage_mld_complex_decongestive_therapy_cdt 

    Infections Associated with Lymphedema 

    http://www.lymphedemapeople.com/wiki/doku.php?id=infections_associated_with_lymphedema 

    How to Treat a Lymphedema Wound 

    http://www.lymphedemapeople.com/wiki/doku.php?id=how_to_treat_a_lymphedema_wound 

    Fungal Infections Associated with Lymphedema 

    http://www.lymphedemapeople.com/wiki/doku.php?id=fungal_infections_associated_with_lymphedema 

    Lymphedema in Children 

    http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_in_children 

    Lymphoscintigraphy 

    http://www.lymphedemapeople.com/wiki/doku.php?id=lymphoscintigraphy 

    Magnetic Resonance Imaging 

    http://www.lymphedemapeople.com/wiki/doku.php?id=magnetic_resonance_imaging 

    Extraperitoneal para-aortic lymph node dissection (EPLND) 

    http://www.lymphedemapeople.com/wiki/doku.php?id=extraperitoneal_para-aortic_lymph_node_dissection_eplnd 

    Axillary node biopsy 

    http://www.lymphedemapeople.com/wiki/doku.php?id=axillary_node_biopsy

    Sentinel Node Biopsy 

    http://www.lymphedemapeople.com/wiki/doku.php?id=sentinel_node_biopsy

     Small Needle Biopsy - Fine Needle Aspiration 

    http://www.lymphedemapeople.com/wiki/doku.php?id=small_needle_biopsy 

    Magnetic Resonance Imaging 

    http://www.lymphedemapeople.com/wiki/doku.php?id=magnetic_resonance_imaging 

    Lymphedema Gene FOXC2

     http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_gene_foxc2

     Lymphedema Gene VEGFC

    http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_gene_vegfc

     Lymphedema Gene SOX18

     http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_gene_sox18

     Lymphedema and Pregnancy

    http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_and_pregnancy

    Home page: Lymphedema People

    http://www.lymphedemapeople.com

    Page Updated: Dec. 28, 2011