Become an Advocate

We need your voice!!

Most people have never heard of Lymphangiomatosis or Gorham’s disease – and unfortunately, this includes our lawmakers. Therefore, it is extremely important that they are educated about these diseases so they can help and protect patients and families. This is a monumental task, and the more constituents we have contacting legislators, the stronger we become, and the harder we are to ignore. So please join us in our advocacy program.

As an advocate, we may ask that you contact your state and federal Congressmen on behalf of the LGD Alliance and inform them about current or prospective legislation that will affect our organization. You can do this through email, letter writing, phone call, or even a personal visit. The more people contacting lawmakers, the better chance those policies in support of LGD Alliance will be passed and our patient’s concerns are met. You will hear more about specific requests to be an advocate as programs, legislation, etc., are being considered or being developed.

When contacting your representative, please remember to keep the following in mind:

  • Contact the representatives from your district. Make sure you inform them that you are a constituent, and that you vote in their district. To find your local representatives, you can use the links following this list.
  • Identify yourself. Identify who you are (patient, family member, friend, etc.) and that you are representing the LGD Alliance. Include your name, address and telephone number so they know you are a constituent in their district and so they can contact you if he/she needs additional information.
  • Be brief and specific. State exactly what action you want your legislator to take, bill to support, etc. If you are writing a letter, please keep it to one to two pages.
  • Get personal. Include a paragraph about how these diseases affect your life, those you love and the great need for public policy to support the LGD Alliance.
  • Express thanks for their time and support.
  • Keep track of your communication. You don’t want to repeat unnecessary information each time you communicate, and also want to keep a record of the legislative response to your request for action. This can be a very powerful tool as a constituent.

 

Sample Letter:

Date

The Honorable ____________________
House/Senate Address
Washington, D.C. 20515

Dear Congress(man/woman)/Senator ____________________,

As a voting constituent in your area, I am writing you on behalf of the Lymphangiomatosis and Gorham’s Disease Alliance (LGD Alliance). This organization was created to support patients and families suffering from these very rare diseases and to support research for finding cures. These diseases are virtually unknown in the medical world and patients desperately need your help. Specifically, I am requesting you to require the NIH to fund and create a patient registry and tissue bank for these patients.

Personal history of how the diseases affect you – i.e. My son Zachary, 7 years old, was diagnosed with Gorham’s Disease when he was 3 years old. He suffers from severe headaches, requiring large daily doses of medication, and chemo type treatments every 3 months. The disease has destroyed sections of his skull, requiring him to wear a helmet in all physical activity. Etc.

The course and prognosis of Lymphangiomatosis and Gorham’s Disease are very difficult to predict because there have never been any studies done to analyze these mysterious conditions. Cases vary from person to person and there is no recognized standard diagnostic measure or treatment for physicians to use. In severe cases, the fatality rate is high and in others the quality of life can be greatly affected by a life-time of doctor’s appointments, chronic pain, and even deformity. Our children are those hardest hit by this disease. It happens that the most severe form generally begins at a very young age giving children little hope for chance at a good life and even at times survival.

I have included some additional information about the LGD Alliance and the diseases. The LGD Alliance would be welcome to any questions you have and discuss how you can help them reach their goals and support their patients.

Thank you for your time,

Sincerely,

____________________

If you need assistance finding contact information for your legislators, please use the links provided below:

U.S Senators: Click on www.senate.gov and use the search engine in the upper right hand corner.

U.S. Representatives: Click on www.house.gov and search by state and zip code in the upper left hand corner.

State Representatives: Click on http://www.ncsl.org/public/leglinks.cfm, choose your state and “legislators” for links to your local house of representatives and senate.

 

Become a Registered Advocate

If you would like to join the LGD Alliance Advocacy Register, please complete our Advocate Registration Form. We will contact you via email as advocacy needs arise. The email will contain specific information and requests for action that will benefit the LGD Alliance. The website will also have updated information with current sample advocacy letters as well.

Thank you for becoming an advocate for the LGD Alliance – you are joining us in giving hope and finding help!