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Join us for the march on capitol hill 2012 Reach Out to Congress in Washington, dc!

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801 Roeder Road, Suite 750

Silver Spring, MD 20910

Toll free: (800) 225-6872

Phone: (301) 562-9890

Fax: (301) 562-9870


Reach Out to Congress in Washington, DC!
One of the most important ways you can impact TSC research is to meet with your elected officials. As you make your plans to travel to Washington, D.C. in February, please be sure to schedule time with your U.S. Senators and Representatives. Below are some tips on how to contact an office to schedule an appointment. Please contact Katie Smith at or (800) 225-6872, if you have any additional questions.

  1. Call the offices of your two Senators and the Representatives for your state as soon as possible to make an appointment for February 22. You can find out who your Senators are at In the upper right hand corner there is a menu entitled “Find Your Senator” and then select your state. Local Representatives can be identified at You can also visit our Government Relations Outreach Toolkit at

  1. Since Members of Congress will not be present in Washington, DC on February 22, you should request a meeting with the legislative aide who handles Department of Defense health programs. When you contact your Congressional offices, ask them for the name and email address of this individual, and then submit a request to meet with them via email.

  1. Let Katie Smith at the TS Alliance know the date and time of your visit as soon as possible ( or (800) 225-6872).

  1. Expect that your visit will only be 10 or 15 minutes long.

  1. To prepare for your visit, reach out to other families, researchers or clinicians within your community or region. Ask them to write a letter about how TSC has affected their lives. If possible, also get photos to include. This is especially important when you are meeting with Representatives from districts other than your own.

  1. Don't be disappointed that you won’t get to meet directly with your Senator or Representative. Key staff are very important and can convey your message effectively (no matter how young they look).

  1. Even if you are nervous, remember - you know much more about TSC than they do.

  1. Tell the person what you are seeking as succinctly as possible.

  1. Tell your personal story or the story of the family you are representing. Bring the letters and photos you collected to show.

  1. If you are unable to answer their questions, don't try to fake it. Tell them you will get back to them with a response. This is actually a good thing because it gives you an opportunity to have even more contact later.

  1. Ask for a commitment. Don't be afraid to ask them if they are going to sign the Dear Colleague letter. Listen carefully to the response.

  1. Bring a camera and ask to get a picture with them for your local paper.

  1. If you meet with a staff member, please make sure you ask for that individual’s business card. Make sure this card includes the staff member’s email address. If it is not printed on the card, ask the staff member to provide it to you.

  1. When your meeting is done, write up notes from the visit on the form provided and give it to a TS Alliance staff person.

  1. Send a follow-up thank you note by email.

  1. If your local paper prints a story about your visit, send that along with another thank you note.

  1. It's all about relationships!

The Government Relations Committee will be targeting key members of Congress who serve in leadership positions and may have the ability to significantly advance our agenda. You can have a meaningful impact by establishing and sustaining a personal relationship, and we encourage you to join with us in reaching out to Congress. We need to make a lot of noise here in Washington and in communities across the country, so let your voice be heard!

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Mission statement: Tuberous Sclerosis Alliance is dedicated to finding a cure for tuberous sclerosis while improving the lives of those affected.

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