How you can help protect unborn children from CMV:
1.)Print out the brochure found on the CDC Web site and ask your doctors to post it in their waiting rooms. See Brochure on CMV http://www.cdc.gov/cmv/resources/CMV_Brochure_Eng.pdf
2.) Donate to an organization that supports CMV research, disseminates information and provides a parent support group, contact the National Congenital CMV Disease Registry at (832) 824-4387 or visit www.bcm.edu/pedi/infect/cmv.
2.5) Donate to the Congenital CMV Foundation. They support research and education: http://www.congenitalcmv.org/donate.htm
3) Contact some of the following groups with CMV information. Perhaps they'll post in their newsletter/magazine and Web sites. There are also many online newsletters for pregnant Tell Ask them to put CMV on the list that pregnant women should avoid. Ask them to tell doctors to warn pregnant women about CMV and how they can avoid it. Remind them it is the leading viral cause of mental retardation and hearing loss.
American College of Obstetricians and Gynecologists, http://www.acog.org/409 12th St., S.W., PO Box 96920Washington, D.C. 20090-6920(202) 638-5577
March of Dimes, (914) 997-4488, http://www.marchofdimes.com/
1275 Mamaroneck AvenueWhite Plains, NY 10605
MOPS, Mothers of Preschoolers. http://www.mops.org/
4)Write letters to the editor of your local papers and magazines
5)Get on shows like "Montel Williams"
6)Write letters to representatives in Congress.
7)Take a leadership role in organizing parent groups. The Baylor parent group is the place to start.
A mother who made a difference offers ideas:
Marti Perhach email@example.com, whose daugther Rose was stillborn as a result of Group B Strep infection, has given me many ideas such as: "Starting your own health observance month just for CMV (I’m not sure if you can do that as an individual) on the National Health Observance Calendar is the best free promotion. http://www.healthfinder.gov/library/nho/ . This page on the Jesse Cause website http://www.thejessecause.org/pages/awareness.html has some ideas. As to the Health Observance Calendar, you would need to have a website for them to refer to or materials to mail or that they can download. October is Pregnancy and Infant Loss Awareness Month in case that is a promotional tool you can use. It is not on the Health Obs. Calendar but is recognized by Compassionate Friends and the SIDS alliance. You can also start pregnancy board threads or contact women’s health websites. I sent the CMV info to a South African website where the moms are promoting Prenatal Infection month with us.
The CDC is putting together a website section and materials on prenatal infections that should be ready in the next few months. The American College of Nurses and Midwives were very receptive. Can you partner with the company that manufactures the CMV test to help get out the information? Ideally I would like to have a brochure in both the prenatal and postnatal gift bags that moms get although that’s a very expensive project—hopefully someday soon! I don’t know of any publishers unless you got a sponsor like Lysol (they sponsored a poster on the CDC website) or a medical company that does patient information (can’t think of any right now but there’s always literature at the doctors’/pharmacy.)Doctors need CME credits so maybe you could get a company to sponsor a lecture on CMV info and the doctor gets their continuing education credit.
Marti's group: ~Group B Strep International~ Group B Strep International was formed in April 2006 by John MacDonald and Marti Perhach who each lost a daughter to Group B strep (GBS). ...www.groupbstrepinternational.org/about.html
CMV moms who said they will help raise awareness:
Lynn Pickus, Lkelli@AOl.comMom to Noah, age 2, born with congenital CMV and big sister Ashley, age 4. My hope is that through our efforts we can prevent other families from the effects that CMV has on an unborn child.
Amanda McClaren, firstname.lastname@example.orgSon Marcus passed away from congenital CMV complications at the age of three.