Why We Took 360-Mile Erie Canalway Challenge--to raise awareness of CMV, #1 birth defects virus

Lisa Saunders and her husband Jim, a newly retired Pfizer scientist, began there 360-mile Erie Canalwway Challenge along the Old Erie Canal at Camillus Erie Canal Park on April 21, 2020, to raise awareness of the #1 birth defects virus, cytomegalovirus (CMV).



Walking the 360-Mile Erie Canalway Challenge

Grandma Lisa Saunders writes about the 8th Wonder of the World, Cytomegalovirus (CMV) and Pandemic Pizza


Baldwinsville, New York—Thanks to the completion of the Empire State Trail, which now connects to the Erie Canalway Trail, my husband Jim and I just finished walking the newly constructed/connected Trail from Camillus through downtown Syracuse to DeWitt, a total of "15 miles on the Erie Canal."

We stroll small segments of the Trail at a time as we tackle the 360-mile Erie Canalway Challenge between Buffalo and Albany. Still in our first year taking the Challenge, I wonder if we will ever finish--and if we will always find a bathroom in time. I also wonder if I will ever lose weight since most of the open restaurants along the way are pizza parlors. So far, we have logged 39 miles and I have only lost three pounds. Only 321 miles and 30 pounds to go!

We commenced the Erie Canalway Challenge on April 21, 2020, at the Camillus Erie Canal Park where we found the first “Wonder” of the Erie Canal (I'm searching for "7 Wonders")—Nine Mile Creek Aqueduct, the waterway bridge for conveying barges over the creek. According to the Park, it is “the only restored navigable Aqueduct in New York State.”

Learning about the new Empire State/Erie CanalwayTrail through Syracuse in December 2020, we began strapping on our ice cleats and grabbing walking sticks to trek through the snow and ice from Reed Webster Park in Camillus to downtown Syracuse, then onto Butternut Creek Aqueduct in Old Erie Canal State Historic Park, DeWitt. Along the way, we found the ruins of Lock 50, known as Gere's Lock; watched bald eagles feeding at Onondaga Lake; viewed the largest shopping mall in New York, Destiny USA; learned about Syracuse's salt mining industry from signs lining the connected Onondaga Creekwalk along Inner Harbor; watched ice skaters at Clinton Square, where remains of the Old Erie Canal can still be seen; headed to the Erie Canal Museum, housed in the only surviving Weighlock building (which I consider a second "Wonder"); strolled directly down the center of Erie Boulevard, once the Erie Canal itself, while trying to imagine barges floating by the fast food restaurants and dollar stores; then onto Towpath Road alongside remains of the Old Erie Canal; then over the highway (481) with a great overhead view of the ruins of Butternut Creek Aqueduct in DeWitt. From there, onto Rome--where construction began on the Erie Canal over 200 years ago on July 4, 1817.

My husband Jim, now a retired Pfizer scientist, has been sharing in my latest adventure in hopes of raising awareness of another “C-virus” plaguing the country, cytomegalovirus (CMV), the leading viral cause of birth defects. Our daughter Elizabeth was born severely disabled by congenital CMV and died at 16 in 2006. According to the CDC, " CMV is the most common infectious cause of birth defects in the United States. About 1 out of 5 babies with congenital CMV infection will have birth defects or other long-term health problems, such as hearing loss" (https://www.cdc.gov/cmv).

When we are not busy walking the Erie Canal Trail or caring for our grandchildren and my mother, we are asking New York legislators to revise the current CMV law to include prevention education so women of childbearing age can learn how to protect their pregnancies. 

Will our fight for a revision of the current CMV law be as tough to pass as the legislation to build the Erie Canal of 1825? Will Jim and I agree on the 7 Wonders, what kind of pizza to order, and find enough bathrooms along the Trail to trek on--to impact the country, much the same way the Erie Canal did? I believe by walking the Erie Canalway Trail, we can share with fans of the Trail our belief that women have a right to know how to protect their unborn babies from CMV--namely by refraining from kissing toddlers on the mouth or sharing cups with them. If you believe women have a right to know about CMV, then please sign and the Women's CMV Rights and Sentiments document found at: https://congenitalcmv.blogspot.com/2021/03/womens-cmv-rights-women-have-right-to.html 

In 2000, Congress established the “Erie Canalway National Heritage Corridor” because it was “instrumental in the establishment of strong political and cultural ties between New England, upstate New York and the old Northwest and facilitated the movement of ideas and people ensuring that social reforms like...the women’s rights movement spread across upstate New York to the rest of the country...” 

As I blog about our Erie Canalway Challenge while commenting on our progress toward raising CMV awareness, I'm hoping our walk will become a movement, like the  women’s rights, that will "spread across upstate New York to the rest of the country" to help prevent birth defects caused by congenital CMV. I believe the recent connection of the Erie Canalway Trail to the 750-mile Empire State Trail may just make that possible.

One mother living near the Erie Canal town of Buffalo heard of my quest and has been painting #StopCMV rocks for me leave along the trail to raise awareness. Tabitha Rodenhaus of Kenmore painted the #Stop CMV rocks with a silver ribbon as silver is the official color of CMV awareness. The back of her rocks reads: "Please help us raise awareness by posting a pic of this rock on social media using #StopCMV. Thank you Kaia's Mom.



To join the Women's CMV Rights Movement

CALL TO ACTION
There are several ways everyone can help prevent CMV birth defects. Because counseling women about CMV is not part of a doctor's "medical standard of care" in the U.S., it is up to the public to prevent the #1 birth defects virus. Her suggestions include:

1) If you agree with the "Declaration of Women's CMV Rights and Sentiments" document, inspired by the Women's Rights "Declaration of Sentiments," then share the following link on social media: https://congenitalcmv.blogspot.com/2021/03/womens-cmv-rights-women-have-right-to.html
(you may wish the sign the document in the comments).

2) Join the National CMV Foundation's "Stop CMV Hands Campaign" by photographing your "Stop CMV" hands everywhere in the United States, preferably under your hometown street or state trail signs so legislators can see where you live. Share photographs with your legislators, asking them to improve CMV prevention education through their Public Health Departments and send them the link to the "Declaration of Women's CMV Rights and Sentiments" document. Share your Stop CMV hand photographs on your social media with the hashtag, #StopCMV. You can alert the National CMV Foundation to your posting by adding @National CMV so its Facebook page pulls up.

3) Live near Erie Canalway Trail? On June 5, 2021, 1pm, join family and friends of those affected by CMV at the Trail of Hope in the Erie Canal town of Lyons the Lyons Community Center. The Declaration of Women's CMV Rights and Sentiments will be read aloud and 226 stones placed on the trail to honor the average number of New York newborns disabled by congenital CMV each year. See: https://congenitalcmv.blogspot.com/p/june-5-1pm-wheelchair-friendly-event.html

Thank you in advance for you help!

Sincerely,

Lisa Saunders

P.S. Walking the Erie Canaway Trail in Lyons, my husband and I were very intrigued by the murals so I just interviewed the president of Mural Mania, Mark De Cracker, for Baldwinsville's public access channel, PAC-B TV. He presented slides of murals and the stories behind them, in the Erie Canal towns of Newark, Lyons, Clyde and Savannah (https://youtu.be/EdAr19JVEuI). I will continue to interview him about the other murals/canal towns in central New York.

See you on the Trail--wheelchairs are welcome!


To take the Challenge, visit: eriecanalway.org/explore/challenge


To join our journey, visit my blog at: Authorlisasaunders.blogspot.com or Facebook page at: www.facebook.com/AuthorLisaSaunders


See more posts to learn more about why the Erie Canal is so cool! 



Jim and Lisa Saunders beside the Richmond Aqueduct ruins of the Old Erie Canal, which can also be seen by boaters in the Seneca River, now the active Erie Canal. Richmond Aqueduct, the second largest aqueduct, can be found by walking the well-marked trails at Montezuma Heritage Park.

As of April 9, 2021, our progress (45 miles) and maps so far:

From  Port Byron to Chittenango


These four maps below, #14, 15, 16 and  17, show the route we've walked so far. See: 
https://empiretrail.ny.gov/map or the following sections: 


No comments: