National CMV Foundation

As many of you may know my son Ryan was born with congenital CMV. Although the virus is no longer active he is still impacted by the diagnosis everyday. However, for those of you that know Ryan you will know that you will never meet a kid who smiles and laughs more.

Ryan was born on September 11th. I am creating a goal to bike 911 miles between May 1st and September 11th.   Congenital CMV is common, serious, and preventable. Consider supporting the National CMV Foundation to educate women of childbearing age about this devastating virus.

It is shocking and infuriating that we had never heard of CMV until standing in the NICU on Aug 2, 2019, hours before our son Brycen John passed away. We have also since received incorrect information on CMV from many sources. Thankfully, the National CMV Foundation has provided us constant support and knowledge.

We truly cannot imagine where we'd be without this organization. We are therefore incredibly passionate in raising #cmvirus awareness and in raising donations for the NCMVF. CMV is the #1 infectious cause of birth defects and developmental disabilities in the US. Each year, 30-40,000 children are born with CMV resulting in 400 deaths and 6-8,000 children with permanent disabilties, in the US alone! More children will have disabilties due to CMV than other well-known infections and syndromes including Down Syndrome, Fetal Alcohol Syndrome, Spina Bifida and Zika. Further, infants are only tested if there is a reason to suspect CMV and a baby must be tested within 21 days of birth to confirm CMV is congenital so there are likely many children that go undiagnosed.

We ask that you consider making a donation to NCMVF in memory of our beautiful baby boy Brycey, our B-Boy, whom we miss every single moment. Donations to the National CMV Foundation will aid in assisting with their mission to:

1. Empower community networks to facilitate CMV conversations to help more people know about CMV before it's too late

2. Influence CMV research priorities regarding CMV prevention, treatment, and intervention 

3. Passing CMV legislation 

4. Advocating for a CMV vaccine

For more information please visit www.nationalcmv.org.

We are also extremely excited and humbled that Emilie has been asked to co-chair the Associate Board at the NCMVF. This will provide us with even more access to information and contact with critical networks. We are thrillled with the opportunity and look forward to sharing insights with you all.

We are the Wiedel family and we're hosting a fundraiser to support The National CMV Foundation! When we found out our daughter, Anna, was born deaf and had gross motor delays due to a common virus I caught while pregnant called congenital CMV (cytomegalovirus), we had no idea that congenital CMV causes more childhood disabilities than any other infectious disease. CMV is also the leading cause of non-genetic hearing loss and deafness in the world. After Anna was diagnosed, many of our friends and family members wanted to start learning sign language, but they didn't know where to start. Others wanted to know more about CMV, but they didn't know where to go. Now you have a chance to do both!

Your donation will grant you access to up to 12 introductory sign language videos taught by Sara Frederickson, a Deaf friend of ours who's an American Sign Language (ASL) instructor. It will also support The National CMV Foundation: a nonprofit dedicated to educating communities about the risks of congenital CMV, especially among pregnant women. Children born with CMV often have hearing loss or significant developmental disabilities including language delays, blindness, cerebral palsy, and epilepsy. CMV also causes stillbirth and early infant death. Unfortunately, 91% of women in the U.S. have never heard of CMV, and don't know that they can prevent CMV by avoiding the saliva and urine of their toddlers while pregnant. CMV remains the most common and disabling infection among babies born in the U.S. The Foundation's primary mission is to eliminate CMV infection within the next generation.

Any amount you choose to donate, no matter how small, is greatly appreciated! 

Links to your ASL videos will be emailed to you on or before February 14! Thank you!