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

Lisa Saunders joins the #Stop CMV hands campaign as she and her husband Jim walk the 360-mile Erie Canalway Trail: Challenge for change: Auburn native walking canal trail to raise virus awareness,



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 (Nov. 27, 2020). Richmond Aqueduct, the second largest aqueduct, can be found by walking the well-marked trails at Montezuma Heritage Park.

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). Here they found the first “Wonder” of the Erie Canal (Lisa is 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.”

Press Release
June 18, 2021
Lisa Saunders
LisaSaunders42@gmail.com




The 360-Mile Erie Canalway Challenge

Grandparents walk the "8th Wonder of the World" while raising awareness of cytomegalovirus (CMV), the leading viral cause of birth defects 

My husband Jim, now a retired Pfizer scientist, has been sharing in my latest adventure, walking the 360-mile Erie Canalway Challenge across upstate New York, 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 one out of every 200 babies is born with congenital CMV infection. About one in five babies with congenital CMV infection will have long-term health problems." (www.cdc.gov/cmv).

As we stroll one-two mile segments of the Trail each week to log miles on the Erie Canalway Trail between Buffalo and Albany, I wonder if we will ever finish--and find a bathroom in time! Since beginning on April 23, 2020, in Camillus, the midpoint of the Trail, we have logged 58 miles--only 302 to go. We've been chased by mosquitoes, lightning, torrential rain, violent wind cracking trees, and have endured snakes, snow, ice, loud gunshots, aching feet and a dead possum. In the meantime, we research the history of the Erie Canal, including its suicides. Why was my Aunt Rebecca's body found in her car submerged in the Canal--did she drive herself in or was she driven in? My 3rd great-grandfather Augustus M. Leach, an engineer on the Canal, was said to have patented the drop gate--can any still be found? 

When we are not busy walking the Erie Canal Trail or caring for 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. June 2021 was proclaimed Cytomegalovirus Awareness Month in the State of New York, stating, "It is imperative that women are educated about the virus
itself and simple preventative measures, such as not sharing food with toddlers, and washing one's hands after changing infants and toddlers diapers..." More needs to be done. The Senate has already passed  S6287 named in memory of our daughter, "Elizabeth's Law," but we need more Assemblymembers to co-sponsor and pass A7560, which "Establishes "Elizabeth's law"; requires child care providers to be trained on the impacts and dangers of congenital cytomegalovirus infection and the treatments and methods of prevention of cytomegalovirus infection; requires distribution of materials relating to cytomegalovirus by certain physicians."

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...”  I believe by walking the Erie Canalway Trail, we can share with fans of the Trail our belief that women have the right to know how to protect their unborn babies from CMV.  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. 

One mother living near the Erie Canal town in the Buffalo area heard of my quest and has been painting #StopCMV rocks for me to 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." When I ran the "Help Wanted" blurb, "Weary Grandparents Seek to Hitch Ride on Erie Canal to Stop CMV" in a boating magazine, I believe this, too, raised awareness, reaching boaters willing to help us experience getting through the locks of the active Erie Canal. 

I'm hoping our trek across upstate New York will gain enough media and public attention to impact the country, much the same way the Erie Canal did. I wonder if our fight for a revision of the current CMV testing law will be as tough to pass as the legislation to build the Erie Canal of 1825. 

As we walk the Trail, I'm also looking for the "7 Wonders of the Erie Canalway Trail" so I have something to write about. Once Jim and I agree on what those Wonders are, I will ask the public to vote on the "8th Wonder" as the Erie Canal was considered the "8th Wonder of the World"--again, another ploy to raise awareness of CMV. 

What can you do to help? 
Please contact your Assemblymember (calling AND emailing is most effective) and ask them to co-sponsor A7560 (https://www.nysenate.gov/legislation/bills/2021/a7560) because you want to ensure women are educated on how to protect their pregnancies from the leading viral cause of birth defects, cytomegalovirus or CMV. 

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Stop CMV rock placed on Trail of Hope at the Lyons Community Center along the Erie Canalway Corridor on April 12, 2021 ahead of the June 5 CMV Awareness event.




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.


Thank you in advance for you help!

Sincerely,

Lisa Saunders
Baldwinsville, New York

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). 

See you on the Trail--wheelchairs are welcome!


Mary Ann Avazian, grandmother to Elizabeth Saunders born disabled by congenital CMV, joins her daughter, Lisa Saunders, by completing a one-mile challenge on the Erie Canalway Trail, in a wheel chair.  Receiving her certificate. Mary Ann posted on the Challenge site (https://eriecanalway.org/explore/challenge):

"I completed the 1-Mile Challenge by wheelchair. My daughter Lisa Saunders pushed me 1.5 miles one way on the Trail near Green Lakes State Park. Although I can walk, I'm a little unsteady so using a wheel chair made it safer. In this photograph of me with my daughter Lisa Saunders, taken by my son-in-law Jim Saunders, I am showing my "Stop CMV" hands as I try to raise awareness of another “C-virus” plaguing the country, cytomegalovirus (CMV), the leading viral cause of birth defects. My granddaughter, Elizabeth Saunders, was born severely disabled by congenital CMV and died at 16 during a seizure in 2006. According to the CDC, "About one out of every 200 babies is born with congenital CMV infection. About one in five babies with congenital CMV infection will have long-term health problems" (www.cdc.gov/cmv).

"I am  hoping that New York legislators will revise the current CMV law to include a CMV education campaign. I'm a retired grammar school teacher and my daughter Lisa a former licensed child care provider. When Lisa was pregnant with Elizabeth, neither one of us knew about CMV and that women who have or work with young children are at increased risk for contracting CMV. According to the CDC, "People with CMV may pass the virus in body fluids, such as saliva, urine, blood, tears...CMV is spread from an infected person in the following ways: From direct contact with saliva or urine, especially from babies and young children."  

"In 2000, Congress established the “Erie Canalway National Heritage Corridor,” partly because it was instrumental in facilitating "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...”

"My daughter, son-in-law Jim Saunders, a retired Pfizer scientist, and I believe that by walking the Erie Canalway Trail, we can share our belief that women have the 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."

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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


Sample journey: 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."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.

Media coverage:
  1. Finger Lakes Times: "MAKING A DIFFERENCE: Couple brings awareness to threat to infant health: CMV", Steve Buchiere (June 4, 2021).
  2. The Citizen:  "NY Senate passes bill, named for CNY couple's daughter, to boost CMV awareness",  Robert Harding (June 2, 2121). 
  3. Syracuse Woman Magazine, "Lisa Saunders Fighting CMV One Step at a Time" by Emma Vallelunga, May 2021,Pages 28-30 (https://issuu.com/eaglenewsonline/docs/swm-may-2021-web-pages/28).
  4. The Citizen, Challenge for change: Auburn native walking canal trail to raise virus awareness,”David Wilcox, Mar 31, 2021
  5. Messing About in Boats, "Give Grandma and Grandpa a Lift on the Erie Canal?", Lisa Saunders, March 2021. (https://drive.google.com/file/d/1E_SzqzoZqDuNOe579iEDb4RhO0a1UMlj/view?usp=sharing)
  6. Cornell Alumni Magazine: In Memory of Elizabeth: Her daughter's death from a preventable disability spurs Lisa Avazian Saunders '82 into action (2015)
  7. News 8: Mystic mother raises awareness of CMV, a risk for pregnant women and their babies (Sarah Cody, June 13, 2018)
  8. Connecticut MagazineMystic Mom 'Overwhelmed' by Governor Signing Law on ‘Stealth Virus’ That Can Catch Pregnant Women Unaware (2015)

Lisa Saunders on the Trail of Hope  at the Lyons Community Center along the Erie Canalway Corridor with her Stop CMV hand, shirt and rock on April 12, 2021 ahead of the June 5 CMV Awareness event.


As of April 13, 2021, our progress and maps so far:
(46 miles) 

We walk different sections of the trail depending on whether we drove east or west of Camillus and where we can find parking, how much time we have etc. We try to fill in gaps before moving onto next leg of Tail. Click Interactive Map:https://www.ptny.org/bike-canal/map/

Lyons (about 1 mile). Between Port Byron and Chittenango (45 miles): according to maps #14, 15, 16 and  17 at: https://empiretrail.ny.gov/map 

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