CMV Program and Abstracts

Download CMV 2012 Program, which begins on Monday in California:
http://www.mcaevents.org/t/files/6838_cmv_2012_final_program_website_10-22-12-it-it.pdf

Download Abstract Summary:
http://www.mcaevents.org/t/files/6842_abstract_book-faculty-it-it.pdf

My talk is on Monday, October 29, 9:00 a.m.
My PowerPoint: mon_900_saunders.ppt
Abstract:

Raising Congenital CMV Awareness

Lisa Saunders

Congenital CMV Foundation

Abstract: Writer Lisa Saunders will discuss her efforts to raise congenital CMV awareness among women of childbearing age. One is through her book about her daughter born severely disabled by CMV, and another is through social media and her blog, congenitalcmv.blogspot.com, which specializes in reaching the general public with news about diagnosis, treatment and vaccine development. This information is then shared on Twitter and Facebook. Saunders will explain how to submit your own posts or press releases for publishing on her blog by writing to her at saundersbooks@aol.com, and how you can become a blogger on the online newspaper Patch.com, owned by AOL. Another important way the CMV community can raise awareness is through writing "Letters to the Editor." Publications are eager to publish your comments if they relate to a certain article--and the public does read those letters. In addition, anyone can send a press release to the media. For example, if you are presenting a talk on congenital CMV or just had an article published, you can send area newspapers and broadcast media a press release--they may just have a reporter contact you for an interview. For additional tips about getting free publicity, Lisa’s free e-book, How to Promote Your Business (or yourself), is available at: www.smashwords.com/books/view/56623

 

Bio: Writer Lisa Saunders has been trying to raise congenital CMV awareness since the death of her 16-year-old daughter Elizabeth in 2006. Born severely disabled by congenital CMV, Elizabeth was unable to walk, talk, sit up, roll over or feed herself. Cortically blind, she was beginning to lose her hearing at the time 9

of her death during a seizure. Despite Elizabeth’s disabilities, she had a happy childhood growing up beside her big sister and a variety of pets, which Lisa recounted in her memoir, "Anything But a Dog: The perfect pet for a girl with congenital CMV," which Lisa uses as a tool to raise awareness. In addition to her book, Lisa raises awareness through her blog, http://congenitalcmv.blogspot.com/, where the scientific community is invited to reach the general public by submitting posts about diagnosis, treatment and vaccine development.

As the parent representative of the Congenital CMV Foundation, Lisa spoke about her daughter’s life with CMV at the 2008 Congenital CMV Conference held at the Centers for Disease Control and Prevention in Atlanta, Georgia. She speaks to nursing students and other health-related organizations and was a featured speaker at a Siemens Healthcare Diagnostics webinar.

Lisa lives in Mystic, Connecticut, with her husband and beagle/basset hound. A graduate of Cornell University and the author of several books, she is a freelance publicist and was awarded the National Council for Marketing & Public Relations Gold Medallion. Her memoir about Elizabeth and the big, homeless dog that became her companion is available as an e-book on Amazon. If a soft cover is purchased directly from the publisher, a percent of the proceeds are donated to the National Congenital CMV Disease Registry and Research Program through the link: www.unlimitedpublishing.com/cmv

 

Photos of Elizabeth are available on Lisa’s website at www.authorlisasaunders.com. Lisa can be reached at saundersbooks@aol.com
 

2012 Conference starts on Monday!

I'm leaving tomorrow to join others who want to learn and share information on congenital CMV. The talks begin on Monday and I'll be giving my talk at 9:00 a.m. about raising congenital CMV awareness locally and online. I hope to see you in California!

Congenital CMV Conferences & International CMV/Betaherpesvirus Workshop

CMV 2012 to be held in San Francisco, California from Monday October 29 through Friday November 2, 2012.

In an effort to efficiently promote the advancement of CMV-based research and to develop novel research, clinical, and public health strategies broadly targeting CMV, the Congenital CMV Conference and the International CMV/Betaherpesvirus Workshop are jointly holding a combined meeting. Entitled CMV 2012, the meeting will be held October 29th to November 2nd, 2012 at the Mission Bay Conference Center in San Francisco, California.

The areas of focus of both the Congenital CMV Conferences and the International CMV/Betaherpesvirus Workshop will be well represented at CMV 2012.

One impetus for CMV 2012 is to provide a cost-effective mechanism for maximizing scientific interactions while minimizing the costs to the attendees. The first part of CMV2012 will emphasize relevant issues of congenital infection, with particular attention on clinical pathogenesis, epidemiology and diagnosis, community awareness and family involvement with congenital CMV disease, novel treatments and clinical trials. In addition, the final session of the first half of the meeting will be devoted to vaccines, antivirals, and therapeutics. This session will overlap with the beginning of the second half of the meeting, which will focus on the molecular virology of CMV with emphasis on aspects of virus-cell interactions, viral replication, antiviral immunity and viral modulation of host immune responses, and transplantation-associated diagnosis/treatment/prevention of CMV disease. We, the organizers, are very excited about the broad exchange of diverse ideas and extensive cross-fertilization that this type of conference will provide. It is our fundamental belief that the cost savings of bringing both conferences together will allow more students, postdoctoral fellows, junior scientists, and clinicians to attend and add to the scientific vitality of CMV 2012.

What Women Aren't Expecting When They are Expecting

I received the following press release from Janelle Greenlee, President/Founder, Stop CMV - The CMV Action Network:

What Women Aren't Expecting When They are Expecting Only 13% of Women Have Heard of CMV - The Most Common Viral Cause of Birth Defects, Disabilities June 1, 2012 - Hot on the heels of the recent box office draw, What to Expect when You're Expecting, pregnant women are being warned by the Centers for Disease Control and Prevention (CDC) about what they may not expect -- CMV (cytomegalovirus), a common virus that can cause birth defects and developmental disabilities. A 2010 CDC survey reported that only 13 percent of women had heard of CMV, and very few were aware of prevention measures against the virus. In the popular pregnancy book by the same name, What to Expect when You're Expecting, women are told that the chances of becoming infected with CMV during pregnancy are "remote." Not so, says the CDC. The CDC reports that one in every 150 children is born with congenital CMV. CMV is the most common congenital (meaning present at birth) infection in the United States and is the most common viral cause of birth defects and disabilities, including deafness, blindness, cerebral palsy, mental and physical disabilities, seizures, and death.     CMV is present in saliva, urine, tears, blood and mucus, and it is carried by 70 percent of healthy infants, toddlers, preschoolers, and children who contract the virus from their peers. Pregnant women who come into contact with these fluids can contract CMV, posing a major risk to daycare workers, preschool teachers, therapists, nurses and, more importantly, mothers who may not practice the best hygiene around their own small children.     "These messages need to be communicated to pregnant women to inform and empower them to take a more active role in their personal hygiene and healthcare decisions," says Janelle Greenlee, president and founder of Stop CMV and mother to twin daughters, both born with congenital CMV.     But pregnant women aren't being educated by medical professionals about how to prevent CMV. Both the American College of Obstetricians and Gynecologists (ACOG) and the CDC recommend that OB/GYNs counsel women on basic prevention measures to guard against CMV infection. These include frequent hand washing, not kissing young children on the mouth, and not sharing food, towels or utensils with small children. The United States Senate has even weighed in, passing legislation that recommends more CMV prevention counseling for women of childbearing age.     Women's awareness of CMV ranks last among other birth defects and common childhood illnesses despite CMV being one of the most common and most serious causes of birth defects and disabilities. "A lot of people are really shocked when they hear that there are as many kids with disabilities from congenital CMV as there are kids with fetal alcohol syndrome or Down syndrome or spina bifida -- and people haven't heard of it," said CDC epidemiologist Michael Cannon. June is National Congenital CMV Awareness Month Stop CMV, a nonprofit organization dedicated to raising awareness of congenital CMV, wants to increase CMV's public profile to save thousands of children from disability and death.Stop CMV can connect media with parent supporters in the United States who will provide local media interviews. Please contact media@stopcmv.org. ###

Stop CMV - The CMV Action Network www.StopCMV.org media@stopcmv.org

Babies Given Fighting Chance

If you are pregnant and want to know if you have a primary cytomegalovirus (CMV) infection, you can ask your OB/GYN for a blood test. In the past, however, there was little one could do with the results—even if they were positive. But now, there is currently a study underway to see if receiving CMV hyperimmune globulin (HIG) will prevent congenital CMV infection—a disease that causes more disabilities in unborn children than Down syndrome. If you are included in this current study, there is a 50% chance you will receive a placebo, because although HIG is promising, it is still unproven.

When I was pregnant with my daughter Elizabeth in 1989, I didn’t know the precautions to take to avoid contracting CMV—namely through careful hand washing when working with young children and their saliva and urine. That means a woman of childbearing age shouldn’t even kiss their own toddlers around the mouth. Young children are the majority of the carriers, and I not only ran a daycare center in my home when I was pregnant with Elizabeth, I had a toddler of my own. My darling Elizabeth was born severely disabled as a result of me passing the virus, which I did not know I had caught because it is often “silent,” onto her. She died when she was 16 during a seizure.

As a result of my work to raise a congenital CMV prevention message, which I hope will become as common as the “don’t change the kitty litter” rule when you are pregnant, I received the following e-mail from Brenna Anderson, M.D., M.Sc. She is Study Chair for a 14-center NICHD Maternal Fetal Medicine Units Network (MFMU) randomized clinical trial testing the efficacy and effectiveness of hyperimmune globulin for prevention of congenital CMV in women with primary infection:. She wrote to me:

“Cytomegalovirus (CMV) is the most common congenital infection, with a prevalence of approximately 1% in the United States, translating into 44,000 congenitally infected infants per year. A substantial proportion of these 44,000 infants will die or suffer permanent injury as a result of their infection. The severity of congenital infection is greatest with primary maternal CMV infection.

“Currently, there is no proven method of preventing congenital CMV infection, and the approach to primary maternal CMV infection in the United States is haphazard and ineffective. One small, non-randomized study suggests that maternal administration of CMV hyperimmune globulin may reduce the rate of congenital CMV infection following maternal primary infection.

“We are hoping that you will be willing to refer women that contact you who may have primary infection to our trial. I can receive the referrals for potentially infected women. I am happy to interact directly with the women if that is what they would prefer. Or I could simply provide contact information for the closest center in our trial.”

To learn more about the current study, visit: http://clinicaltrials.gov/ct2/show/NCT01376778?term=congenital+cmv&rank=4

or contact:

Brenna Anderson, M.D., M.Sc.

Women & Infants Hospital of RI

101 Dudley Street

Providence, RI 02905

banderson@wihri.org

401-274-1122 ext. 7456

Pregnant with CMV?

If you learned you have a primary cytomegalovirus (CMV) infection and are pregnant, there is currently a study underway to see if receiving CMV hyperimmune globulin (HIG) will prevent congenital CMV infection.

If you are included in this current study, there is a 50% chance you will receive a placebo, because although HIG is promising, it is still unproven.

I received the following e-mail from the Study Chair for a 14-center NICHD Maternal Fetal Medicine Units Network (MFMU) randomized clinical trial testing the efficacy and effectiveness of hyperimmune globulin for prevention of congenital CMV in women with primary infection:

Cytomegalovirus (CMV) is the most common congenital infection, with a prevalence of approximately 1% in the United States, translating into 44,000 congenitally infected infants per year. A substantial proportion of these 44,000 infants will die or suffer permanent injury as a result of their infection. The severity of congenital infection is greatest with primary maternal CMV infection.

Currently, there is no proven method of preventing congenital CMV infection, and the approach to primary maternal CMV infection in the United States is haphazard and ineffective. One small, non-randomized study suggests that maternal administration of CMV hyperimmune globulin may reduce the rate of congenital CMV infection following maternal primary infection.

To learn more about the current study, visit: http://clinicaltrials.gov/ct2/show/NCT01376778?term=congenital+cmv&rank=4

or contact:

Brenna Anderson, M.D., M.Sc.

Women & Infants Hospital of RI

101 Dudley Street

Providence, RI 02905

banderson@wihri.org

401-274-1122 ext. 7456

Another Mom Didn't Know Daycare Danger

Lisa Saunders with her daughter, Elizabeth (1989-2006)

 

I just went to the hospital to visit yet another new mom who didn't know that she was putting her pregnancy at risk by working at a daycare center. I too wasn't warned by my OB/GYN about the precautions I should have taken if working with young children. My daughter, Elizabeth, was born severely disabled by the virus in 1989. She died at the age of 16, leaving me heartbroken.

 

I have been trying to reach doctors with the message they should warn their patients about congenial CMV (cytomegalovirus), but perhaps I should spend more time trying to get day care centers to warn their workers, as is done on cigarette and alcohol labels. Or perhaps I should fight for signs in restrooms stating that certain infections can harm unborn children--therefore the necessity of hand washing after changing diapers, wiping noses, etc. I welcome any ideas from the community. Everyone knows not to change the kitty litter when they are pregnant. How can we let the country know that the saliva and urine of children needs to be handled cautiously?

 

I have written the following press release to let organizations know of my availability as a free local speaker on how to prevent the #1 viral cause of birth defects:

 

Author Lectures on #1 Birth Defects Virus—More Common Than Down Syndrome

 

"What you don't know can hurt your unborn baby"

 

Author and mother of child born disabled by congenital CMV, Lisa Saunders of Mystic, CT,  is available to speak on how to prevent the #1 viral cause of birth defects, which causes more disabilities than Down syndrome.

 

Few women have heard of congenital CMV (cytomegalovirus) and more than half of OB/GYNs surveyed admitted they don't warn their patients about it.

 

According to the CDC:

• Every hour, congenital CMV causes one child to become disabled
•  Each year, about 30,000 children are born with congenital CMV infection
• About 1 in 750 children is born with or develops permanent disabilities due to CMV
• About 8,000 children each year suffer permanent disabilities caused by CMV

Author Lisa Saunders didn’t know about CMV prevention until her daughter, Elizabeth, was born severely disabled by the virus in 1989. Elizabeth had cerebral palsy, epilepsy, and was mentally, visually and hearing impaired. While pregnant, Saunders ran a licensed daycare in her home while raising a toddler.

 

Saunders spoke at the Centers for Disease Control and Prevention (CDC) in Atlanta, G.A., at the international 2008 Congenital CMV Conference. She said, “Mothers at the conference were coming up to me after my speech, with their children in wheelchairs or wearing hearing aids, and asked, ‘Why didn’t my OB/GYN warn me how to protect my baby from CMV? Why haven't you done more to shout it from the rooftops?’”

 

The CDC makes the following recommendations on simple steps you can take to avoid exposure to saliva and urine that might contain CMV:

Wash your hands often with soap and water for 15-20 seconds, especially after

• changing diapers  
• feeding a young child
• wiping a young child’s nose or drool
• handling children’s toys

Do not share food, drinks, or eating utensils used by young children

 

Do not put a child’s pacifier in your mouth

 

Do not share a toothbrush with a young child

 

Avoid contact with saliva when kissing a child

 

Clean toys, countertops, and other surfaces that come into contact with children’s urine or saliva

 

Saunders said, "Until OB/GYNs make CMV prevention a standard practice of care, I'm trying to "shout it from the rooftops" through my memoir, “Anything But a Dog! The perfect pet for a girl with congenital CMV.” I hope to reach a general audience by sharing the unusual account of how a big, old homeless dog found his way to Elizabeth's couch. I also include CMV prevention and treatment tips from the country’s leading CMV experts. The first chapter is available for free viewing in Amazon’s e-book version at: www.amazon.com/dp/B005GRAE0I

 

The next international congenital CMV conference, where doctors, researchers and families will gather, will be held in San Francisco, California, Mon., Oct.29 - Fri., Nov. 2, 2012. A major objective of the meeting is to allow relatives caring for CMV patients to learn as much as possible from the most dedicated specialists in the world. The conference organizers have devised a special registration fee for up to four family members to attend. More Info: www.mcaevents.org/t/01/cmv2012/index.aspx

 

To learn about the congenital CMV community of families, visit my blog at: http://congenitalcmv.blogspot.com/

To learn more about the book and The National Congenital CMV Disease Registry and Research Program, visit: http://www.unlimitedpublishing.com/cmv/

###

See Lisa Saunders in a short news interview at: http://www.wusa9.com/video/default.aspx?bctid=34235723001 or visit her website to see photos of her daughter, Elizabeth, at http://www.authorlisasaunders.com/

 

Link to country's leading congenital CMV experts: http://www.congenitalcmv.org/foundation.htm

 

An article quoting Saunders and CMV experts: http://www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313