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Letter Writing Campaigns
Save Babies Through Screening has several letter writing campaigns that we need your help with.  Please consider taking a moment to send a letter today!!!

Letters to U.S. Healthcare to encourage that they coverage cost of supplemental newborn screening

Letters to Members of the Appropriations Committee Regarding to Appropriations for the Newborn Screening title of the Children's Act of 2000

Tips on Writing Letters About Newborn Screening Issues 
Many thanks to consumer advocate, Tricia Luker, for her input on these tips.

The efforts of families are clearly making a difference in newborn screening and our voices are being heard. Many families are taking the initiative to write legislators regarding newborn screening. With that in mind, there are several points to remember when writing a letter to these people.

• Include a photo of your child.
• Identify your child by name.
• Include your personal story.
• Write legibly. Handwritten letters are good, but they must be readable.
• Identify yourself as a consumer, family member, or an advocate.
• Include a return address on the letter.
• Focus on one issue, bill or topic.
• Identify a bill by name and/or number.
• Personalize the letter to show depth of concern.
• Be positive and respectful. One of the largest mistakes a family can make in dealing with professionals is to appear to be attacking the person.
• State the reason for writing, explaining how the specific bill can affect a specific individual, family or entire group.
• Be clear, stating exactly what is wanted from the legislator.
• Ask for a written response that states their position on the issue.
• Thank them for his/her time on the issue.
• Keep the letter to one page.
• Show that you are familiar and knowledgeable on the subject.
• Call other organizations for help, if necessary, with the letter.
• Send a copy of the letter (cc:) to the appropriate organizations involved in the issue.
• Send a “thank you” when a response is received.
• Encourage your friends and families to send letters too.

One of the biggest points that consumer "pros" point out is that letters are most effective when handwritten and sent via regular mail (not email).  Most consumers who are accustomed to writing their legislators and have had good response have found that regular mail is the best way to send these letters as Senators and Representatives are e-bombed every day and e-mail is not as effective.

Another good point is to be up front. The first sentence of your letter should state exactly what you want.

A "pro" consumer advocate recently spoke at the Genetic Alliance conference and said that she and her group got on the Rosie O'Donnell Show by writing one letter. The letter said "Dear Rosie, Can "Person's Name" come to your show and speak about XX disorder and the XX organization." This group has had much success with such short and sweet letters.

Active families are what is making the difference in newborn screening and helping to keep it in the public eye. Along with the pointers above, there is only one other thing to remember when writing letters for newborn screening - every letter counts!!

Finding Out Who Your Legislators Are
You can find out who your federal legislators are at:

House of Representatives
http://www.house.gov/writerep/wyrfaqs.htm 

Senate
http://www.senate.gov/contacting/index.cfm 

Contacting Your Legislators By Mail
Once you know the name of your legislators, you may send letters to:

To Senators:		To Representatives:
The Honorable _insert name U.S. Senate     Washington, D.C. 20510		The Honorable _insert name U.S. House of Representatives Washington, D.C. 20515

                                                
Contacting Your Legislators By Phone
Call (202) 224-3121 and ask for your Representative's or Senator's office.  This number reaches the main switchboard at the U.S. Capitol that services all House and Senate offices and committees. 

A phone call to your representative is a good way to let your legislator know how you feel about a particular issue. Phone calls are especially effective if you have already established a relationship, and a great way to introduce yourself if you have never talked to your legislator or his or her staff.  The key point is to let them know you're an advocate for newborn screening and rare disorder issues.  

Here are some pointers for phone calls to your legislators:

• Be sure to identify yourself as a constituent. 
• Be concise, clearly identify the issue you wish to discuss, and state your position.
• If you speak with a staff person, ask that your legislator be informed of your call.
• A call to Washington is much more likely to be noticed than a call to a district office.

Contacting Your Legislators By Email
Email can be an excellent way to communicate with your legislator and is a good way to follow-up on issues once you have made initial contact with your legislators through other methods.  Because Senators and Representatives are often " e-bombed" with emails, is not always as effective as other methods of communication.  You can use the following web-sites to obtain your legislator's email address.

www.house.gov
www.senate.gov
www.congress.org

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