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 Day on the Hill 2005

Dear Friends:

In May 2004, we had the pleasure and honor of hosting a highly successful First Candle “Day on the Hill” in Washington, D.C. The impact of visits to congressional offices by more than 50 knowledgeable professionals, advocates and parents carrying messages related to infant health and survival was significant. The advocacy luncheon that day reaffirmed our belief that changing perceptions and prioritization of saving newborn lives is an achievable goal.

We have since heard that members of the congressional offices were moved by the stories of parents who have lost babies to Sudden Infant Death Syndrome (SIDS), stillbirth and metabolic disease. Also, they were impressed by the passion of professionals who work in this field. We understand that because of this effort and other similar advocacy communications that attention and funding for SIDS and stillbirth research, a more uniform and sensitive death scene protocol and pilot registries for stillbirth are evolving.

I am writing to appeal for your help! We need you as a 2005 Advocacy Delegate to visit Senate and House Congressional offices. It is important that you sign up NOW!

On Wednesday, September 14th, Thursday September 15th, and Friday September 16th we will schedule individual and team appointments for infant survival advocates to visit legislative offices in Washington. The timing of the visits coincides with pre-conference and opening days of the First Candle/International Stillbirth Alliance international conference TOGETHER Making a World of Difference... we hope you will plan to attend!

If you wish to participate in this “Day on the Hill” event, please contact Melissa Matson, our representative at Golin Harris, to schedule your appointment. Melissa can be reached at 703-741-7500 or mmatson@golinharris.com. You will need to let her know what state you are from, whether anyone else is accompanying you and if you have a particular interested in SIDS, stillbirth or newborn screening issues. We will have general talking points, but we know many parents and professionals are passionate about one area or another.

You will need to set aside about 2 hours for your visit, and appointments are usually scheduled beginning at 10:00 am. If you are attending the conference, you might want to consider a Wednesday appointment. If you need to schedule for Thursday or Friday, please check the conference agenda before making your appointment. We wouldn’t want you to miss a session that is important to you! You can access the Metro directly from the hotel and Capital Hill is only a few stops away!

Once you have scheduled your appointment, you will receive a packet of information and instructions for your visit. We have also scheduled a conference call for 4:00 PM EST on September 7, 2005, so that all participants can be briefed on making the most of your time on Capital Hill. As an official Advocacy Delegate, you will be recognized with a ribbon on your conference badge, receive public recognition in plenary sessions and be mentioned in the conference program. We understand, however, that the real motivation for your effort will be the knowledge that you have made a difference in the lives of families and their infants nationwide. Please note that conference participation is not a prerequisite to being an Advocacy Delegate.

If you have any questions about participating in “Day on the Hill 2005” please feel free to contact Michelle Zareck at 800-221-7437 or michelle.zareck@firstcandle.org. Please consider sharing this information with others that may be interested in participating. We thank you for your support and look forward to seeing you in September!

Sincerely,

Marian Sokol, Ph.D., MPH
President, First Candle/SIDS Alliance