Alice G. Patterson<\/a><\/em><\/p>\nIn 1955, a group of parents got together. They had one thing in common: their young children had been diagnosed with a chronic, incurable disease \u2014 cystic fibrosis. The children weren\u2019t expected to live past elementary school.<\/p>\n
The parents formed the Cystic Fibrosis Foundation, with a simple goal in mind. They wanted to \u201cadd tomorrows,\u201d a motto the organization still follows today.<\/p>\n
As decades passed, the foundation\u2019s grassroots efforts helped people diagnosed with cystic fibrosis live well into their 30s, 40s and beyond. Medications and treatments were invented and improved upon over the years.<\/p>\n
The national organization still relies on parents, friends and community members to help raise money for research, and receives no federal funding.<\/p>\n
So far, there\u2019s no cure for cystic fibrosis.<\/p>\n
\u201cWe\u2019ve got the end in sight,\u201d said Amy Spranger, the executive director of the Cystic Fibrosis Foundation\u2019s Central New York chapter. \u201cAnd we can\u2019t take our foot off the accelerator right now.\u201d<\/p>\n
The chapter of the Cystic Fibrosis Foundation covers a 15-county region, from St. Lawrence County to Broome County. That\u2019s approximately the same footprint the Robert C. Schwartz Cystic Fibrosis Center at SUNY Upstate Medical University serves, Amy pointed out. The chapter focuses on fundraising with a number of walks, an annual hike, a dinner dance and more throughout the year. The money raised goes to the national office. In turn, more than that amount comes back to the area, Amy explained.<\/p>\n
Year after year, Team Tess leads the way in fundraising efforts. Last year, the group raised $60,963. The team was formed in part by Mary Michaels, shortly after her daughter Tess was diagnosed with cystic fibrosis in 2001. She\u2019s been a leading advocate since, and was named this year\u2019s Champion for a Cure at the local chapter\u2019s 65 Roses Dinner Dance in February.<\/p>\n
\u201c[Mary is] so humble and so down-to-earth. She had said to me,\u2018Well, I\u2019m just doing what any other mother would do,\u2019\u201d Amy said. \u201cShe just doesn\u2019t have a perspective on her network and what she raises, and really how much she does for the chapter and the foundation.\u201d<\/p>\n
The diagnosis<\/h4>\n
When Mary and Mike Michaels met in high school, they hadn\u2019t heard of cystic fibrosis. When they started dating years later, they hadn\u2019t heard of cystic fibrosis. When they got married and had their first child, they still hadn\u2019t heard of cystic fibrosis.<\/p>\n
They didn\u2019t know about the disease throughout the first year of their daughter Tess\u2019 life, 12 months filled with medical appointments, colds, upset stomachs and 15 to 20 diaper changes a day.<\/p>\n
\u201cHad we even known about what cystic fibrosis was, maybe we would have thought about it,\u201d Mary said. \u201cBut we didn\u2019t think twice.\u201d<\/p>\n
Tests for cystic fibrosis weren\u2019t typically performed at birth. It\u2019s now mandatory, Mary explained, adding that it can save parents the months she and Mike spent questioning what might be wrong with their child, and can add more time for treatment.<\/p>\n
When Tess was about 14 months old, the doctors decided to test her for the disease \u2014 first with two sweat tests, which signaled positive, and then with blood work. The first-time parents finally knew the cause of their daughter\u2019s chronic colds.<\/p>\n
They were initially devastated, Mary said, traces of the emotions that accompanied the diagnosis showing on her face.<\/p>\n
\u201cIs she going to have a normal life?\u201d Mary recalled wondering.<\/p>\n
The parents were advised not to venture much further online than the Cystic Fibrosis Foundation\u2019s website. They followed the advice for the most part, turning their efforts to developing a routine of care for Tess and fundraising for the foundation.<\/p>\n
Around the same time Tess was diagnosed, Mary\u2019s sister found a flyer at her hairdresser\u2019s for the foundation\u2019s Great Strides walk.<\/p>\n
\u201cWe should do that this year,\u201d she suggested.<\/p>\n
With the help of friends and family, Team Tess generated about $3,000 that year.<\/p>\n
\u201cOur thought was basically: the Cystic Fibrosis Foundation, the more money they get, it goes to science and they\u2019ll find a cure,\u201d Mary said. \u201cThat\u2019s our belief.\u201d<\/p>\n
Adding to the team<\/h4>\n
The first year of treatment was hard. Tess was too small to wear the vest she now uses to help dislodge the mucus from her lungs, and too young to really communicate very well with her parents. Mary and Mike were limited to chest physical therapy.<\/p>\n
\u201cThey give you a sheet of directions on all the different positions for postural drainage,\u201d Mary said. \u201cYou have to stick [your child] upside down and slap their backs with these cups that they give you. You do that for two minutes, and then you flip them in another direction. It ended up being 45 minutes of torture.\u201d<\/p>\n
Mary and Mike would take turns singing or reading to Tess while the other parent did the treatments. It didn\u2019t make witnessing their child going through the experience any easier.<\/p>\n
Eventually, after Tess turned 2, they were able to stop the chest physical therapy and turn to the vest, which she still uses daily.<\/p>\n
When Tess turned 4, the family grew. Mary and Mike had another baby girl, Taylor. Although she had a 25 percent chance of being diagnosed with cystic fibrosis \u2014 since the parents both carry the gene \u2014 she wasn\u2019t born with the disease.<\/p>\n
Raising a 4-year-old and a newborn would have been a handful for anyone, regardless of illness. With the routine of daily treatments, it was hard to juggle everything, Mary said. She added that in some families, the majority of the responsibility might fall on the mother. For the Michaels, that wasn\u2019t the case.<\/p>\n
\u201cHaving Mike,\u201d she began with a smile, \u201che\u2019s so helpful. \u2026 We\u2019re definitely a team, because we couldn\u2019t do any of it without each other\u2019s help.\u201d<\/p>\n
Like any pair of siblings, Tess and Taylor have been jealous of each other at times, Mary said. When Tess had doctors appointments, Taylor would have to stay at a friend\u2019s house. Plans had to be made around Tess\u2019 treatments.<\/p>\n
But Tess probably envies the fact that her sister doesn\u2019t have to visit the doctor as frequently or undergo the treatments, Mary said.<\/p>\n
\u201cHopefully they get it, that someday they\u2019ll be best friends,\u201d she added with a smile.<\/p>\n
The daily routine<\/h4>\n
In the last decade and a half, delivery of treatments for cystic fibrosis has advanced, Mary said. Now, patients can get the medicine they need more quickly.<\/p>\n
But Mary and Mike still have to make sure Tess spends time with her medicines and machines each day.<\/p>\n
Every morning, Mike wakes Tess up around 5:15 a.m. to start the process. First, she takes a puff of medicine to open her airwaves. Then, she puts on the vest, and uses a breathing nebulizer. It makes her cough up the mucus. Next, she takes a couple more treatments, including antibiotics. Then \u2014 about 45 minutes to an hour after the whole routine started \u2014 she eats breakfast, takes enzymes and other antibiotics, and starts her day. Throughout the day, she\u2019s on a 23-hour continuous IV.<\/p>\n
Tess also has to check her blood sugar regularly, because a high percentage of cystic fibrosis patients develop diabetes as well, Mary explained. At this point, they\u2019re not sure if Tess has the additional disease.<\/p>\n
They try to control her blood sugar throughout the night with a feed tube. Since cystic fibrosis patients burn more calories just breathing than those who don\u2019t have the disease, they need to take in more food, Mary said.<\/p>\n
\u201cEverything that [Tess is] on, you think about how her body handles all that stuff, but she does,\u201d she said. \u201cIt doesn\u2019t slow her down.\u201d<\/p>\n
Fighting for a cure<\/h4>\n
Since Mary and Mike learned what cystic fibrosis was back in 2001, their family has been \u2014 to use Mary\u2019s word \u2014 a team.<\/p>\n
The Michaels live busy, crazy lives, Mary said with a laugh, and nothing gets in the way of that. They go on family vacations. They have neighborhood nights with friends. Mary and Mike go away for the weekend sometimes.<\/p>\n
Last summer, the family experienced a \u201cfirst.\u201d Tess had only spent a weekend at most away from her parents. In August, she spent a week and a half away \u2014 overseas on a school trip to Europe.<\/p>\n
While it was definitely harder on Mary than it was on her daughter \u2014 \u201cShe was like, \u2018I\u2019m away! Woohoo!\u2019\u201d Mary joked \u2014 it did help the family work toward goals to make Tess more independent, Mary pointed out.<\/p>\n
\u201cWe don\u2019t let this slow us down, or slow her down,\u201d she said.<\/p>\n
The Michaels family runs circles around the disease. And in the relationship they\u2019ve built with the Cystic Fibrosis Foundation, they\u2019re continually raising awareness and funds to find a cure. Although this year\u2019s Champion for a Cure has helped spearhead efforts to raise thousands upon thousands of dollars for the foundation, she remains humble. In Mary\u2019s eyes, she\u2019s just a mother doing a mother\u2019s job.<\/p>\n
\u201cI always say that we\u2019re only as fortunate as the people that come to our events. We are so lucky, because\u2026\u201d Mary paused and then, with a strong smile, said, \u201cWe have such a good support system.\u201d SWM <\/em><\/p>\nInterested in fundraising for the Cystic Fibrosis Foundation? Visit cff.org.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"Team Tess’ Tomorrows By Lorna Oppedisano | Photography by Alice G. Patterson In 1955, a group of parents got together. They had one thing in common: their young children had been diagnosed with a chronic, incurable disease \u2014 cystic fibrosis. The children weren\u2019t expected to live past elementary school. The parents formed the Cystic Fibrosis…<\/p>\n","protected":false},"author":3,"featured_media":675,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[99],"tags":[146,224,223,228,133,222,201,226,225,227],"class_list":["post-700","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-featured","tag-alice-g-patterson","tag-amy-spranger","tag-cystic-fibrosis-foundation","tag-great-strides","tag-lorna-oppedisano","tag-mary-michaels","tag-may-2017","tag-mike-michaels","tag-team-tess","tag-xtreme-hike"],"gutentor_comment":0,"jetpack_featured_media_url":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2017\/04\/Mary-Michaels-Cystic-Fibrosis-Research-Advocate-0007.jpg?fit=5200%2C3477&ssl=1","jetpack_sharing_enabled":true,"jetpack-related-posts":[{"id":1763,"url":"https:\/\/www.syracusewomanmag.com\/?p=1763","url_meta":{"origin":700,"position":0},"title":"Nappa Family","author":"Staff","date":"April 30, 2018","format":false,"excerpt":"It Takes a Family\u00a0 By Lorna Oppedisano | Photography by Alice G. Patterson\u00a0 \u201cWhen you\u2019re a mom and you have kids with cystic fibrosis, you wake up in the morning and every day is unpredictable, because your day could change from minute to minute,\u201d Cindy Nappa said. Cindy\u2019s connection to\u2026","rel":"","context":"In "Featured"","block_context":{"text":"Featured","link":"https:\/\/www.syracusewomanmag.com\/?cat=99"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/04\/Tracy-Marino-cystic-fibrosis-org-syracuse-0011-2.jpg?fit=1200%2C801&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/04\/Tracy-Marino-cystic-fibrosis-org-syracuse-0011-2.jpg?fit=1200%2C801&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/04\/Tracy-Marino-cystic-fibrosis-org-syracuse-0011-2.jpg?fit=1200%2C801&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/04\/Tracy-Marino-cystic-fibrosis-org-syracuse-0011-2.jpg?fit=1200%2C801&ssl=1&resize=700%2C400 2x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/04\/Tracy-Marino-cystic-fibrosis-org-syracuse-0011-2.jpg?fit=1200%2C801&ssl=1&resize=1050%2C600 3x"},"classes":[]},{"id":3270,"url":"https:\/\/www.syracusewomanmag.com\/?p=3270","url_meta":{"origin":700,"position":1},"title":"Inspire: Marygrace Fronk – Keeping fit while helping others","author":"Alyssa Dearborn","date":"August 30, 2022","format":false,"excerpt":"By Norah Machia Marygrace Fronk discovered many years ago that half-marathons (13.1 miles in distance) are not just for runners. They are also for walkers of any age. At age 70, Fronk has completed 38 of them, and she is still going strong. 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Earlier in the day, Nancy \u2014 a geologist who worked 50- to 60-hour\u2026","rel":"","context":"In "Featured"","block_context":{"text":"Featured","link":"https:\/\/www.syracusewomanmag.com\/?cat=99"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/02\/Nancy-Aureli-0003.jpg?fit=1200%2C801&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/02\/Nancy-Aureli-0003.jpg?fit=1200%2C801&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/02\/Nancy-Aureli-0003.jpg?fit=1200%2C801&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/02\/Nancy-Aureli-0003.jpg?fit=1200%2C801&ssl=1&resize=700%2C400 2x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/02\/Nancy-Aureli-0003.jpg?fit=1200%2C801&ssl=1&resize=1050%2C600 3x"},"classes":[]},{"id":1288,"url":"https:\/\/www.syracusewomanmag.com\/?p=1288","url_meta":{"origin":700,"position":3},"title":"Annie Taylor","author":"Staff","date":"December 1, 2017","format":false,"excerpt":"Designing Your Passion By Lorna Oppedisano | Photography by Alice G. 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So, returning home every evening from her job at Stonewall Kitchen\u2019s in-house design department, she\u2019d set\u2026","rel":"","context":"In "Featured"","block_context":{"text":"Featured","link":"https:\/\/www.syracusewomanmag.com\/?cat=99"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2017\/11\/Annie-Taylor-0009.jpg?fit=1200%2C801&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2017\/11\/Annie-Taylor-0009.jpg?fit=1200%2C801&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2017\/11\/Annie-Taylor-0009.jpg?fit=1200%2C801&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2017\/11\/Annie-Taylor-0009.jpg?fit=1200%2C801&ssl=1&resize=700%2C400 2x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2017\/11\/Annie-Taylor-0009.jpg?fit=1200%2C801&ssl=1&resize=1050%2C600 3x"},"classes":[]},{"id":2053,"url":"https:\/\/www.syracusewomanmag.com\/?p=2053","url_meta":{"origin":700,"position":4},"title":"Sora Iriye","author":"Staff","date":"September 2, 2018","format":false,"excerpt":"Creating Connection through Art By Lorna Oppedisano | Photography by Alice G. 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Born and raised\u2026","rel":"","context":"In "Featured"","block_context":{"text":"Featured","link":"https:\/\/www.syracusewomanmag.com\/?cat=99"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/09\/Sora-Sol-0002.jpg?fit=1200%2C798&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/09\/Sora-Sol-0002.jpg?fit=1200%2C798&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/09\/Sora-Sol-0002.jpg?fit=1200%2C798&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/09\/Sora-Sol-0002.jpg?fit=1200%2C798&ssl=1&resize=700%2C400 2x, https:\/\/i0.wp.com\/www.syracusewomanmag.com\/wp-content\/uploads\/2018\/09\/Sora-Sol-0002.jpg?fit=1200%2C798&ssl=1&resize=1050%2C600 3x"},"classes":[]},{"id":1755,"url":"https:\/\/www.syracusewomanmag.com\/?p=1755","url_meta":{"origin":700,"position":5},"title":"The Haven at Skanda","author":"Staff","date":"April 30, 2018","format":false,"excerpt":"Creating a Safe Space for Everyone\u00a0 By Lorna Oppedisano | Photography by Alice G. Patterson\u00a0 Marion Secor, The Haven at Skanda\u2019s board president, had little experience with horses, let alone any inkling of desire to raise them \u2014 at least not until a cross-country trip changed her life. 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