It’s Time to Have “The Vape Talk”

When Shaquana Divers talked with her teenage daughter about e-cigarettes, she was shocked to learn just how popular they are with kids at school. Her daughter said that even though kids are told about the harms of e-cigarettes, many still use them. Some start using as early as sixth grade. Divers, an Executive Program Manager with Excellus BlueCross BlueShield, was concerned about the growing popularity of e-cigarettes.

Numbers to Gasp At

Parents like Divers aren’t the only ones shocked to learn about the popularity of e-cigarettes. In New York state, e-cigarette use among youth increased 160 percent between 2014 and 2018.

Trends in e-cigarette use among high school student in New York

One in four high school students in New York said they used e-cigarettes at least once in 2018.  The U.S. Surgeon General has gone so far as to declare the  increase in youth vaping as an epidemic. 

Behind the Smokescreen

E-cigarettes are battery-operated devices that heat a liquid (sometimes called “vape juice” or “e-juice”) to produce an aerosol vapor that is inhaled. They are also known as vape pens, e-cigs, mods or by a common brand name,  JUUL®.

E-cigarettes can look like a variety of objects, such as USB drives, cigarettes or pens. They can easily be hidden. In fact, some devices don’t even produce a vapor cloud when exhaled, making them harder to spot.

Small Device, Big Problems

Many young people believe that e-cigarettes are less harmful than other tobacco products. But e-cigarettes are not harmless. They can contain a number of dangerous ingredients such as:

  • cancer-causing chemicals
  • chemicals linked to lung disease
  • heavy metals, such as nickel, tin, and lead
  • ultrafine particles that can be inhaled deep into the lungs
  • high levels of nicotine

It is unsafe for young people to use any product containing nicotine. Nicotine can cause addiction, harm the developing brain and affect memory and attention. Some e-cigarette cartridges have a higher concentration of nicotine than a pack of cigarettes.

Many people aren’t aware that e-cigarettes can contain nicotine. One study showed that 63 percent of JUUL® users between 15-24 years old didn’t know the product contains nicotine.

Wheezing, Explosions and Long-Term Risk

Research shows that e-cigarettes can also have other health impacts. E-cigarette use among young people may:

According to the CDC, e-cigarettes can also have defective batteries that can cause fires and explosions. A few of these have led to serious injuries, including  third degree burns, broken teeth, and even loss of vision.

Since e-cigarettes are still a relatively new product, scientists don’t know all of the long-term side effects of e-cigarettes.

Tips For Having “the vape talk”

With serious health risks and a lot of misinformation, it’s important to talk with your child about e-cigarettes. For Divers, open conversations are a key to her parenting strategy. That’s why she made it a priority to talk with her daughter about e-cigarettes and support her in continuing to make good, healthy choices.

But, it’s not always easy to have sensitive discussions with your children. The American Lung Association offers these tips for having the “vape talk” with your child:

  1. Choose a time and place where you are both comfortable and more likely to open up, like when you’re riding in the car or having dinner.
  2. Acknowledge the smart decisions your child makes  every day. Encourage them to keep positive choices going.
  3. Ask open-ended questions  to encourage conversation. Some suggested conversation starters include: Are a lot of kids vaping at your school? What do you think about vaping? Do you know how vaping can damage your health?

Resources for quitting

E-cigarettes are not approved by the FDA as a method to quit smoking. Use only FDA-approved methods when trying to quit.

Here’s just a few ways to get the ball rolling when it comes to quitting or helping someone quit:

  • Talk with your doctor
  • Call the NYS Smoker’s Quitline at 1-866-NY-QUITS (1-866-697-8487)
  • Visit
  • Visit The Truth Initiative website to learn about text message programs that help young people stop using e-cigarettes

A free e-cigarettes educational poster is available to download here

Hidden Gems: The Ausable Chasm in the Adirondacks

This summer a group of us moms and our teens took a weekend trip to the Ausable Chasm in the Adirondacks.  After visiting the North Star Underground Railroad located on the same park grounds, we explored the Chasm. We were hoping to build leadership skills among our teens, and have fun!

The trip was a highlight of my summer and one that I will remember for years to come.  Since visiting I have been telling my friends and family members about this upstate New York treasure!

The Highlights

The Ausable Chasm is one of the oldest natural attractions in the United States. It’s also known as the “Grand Canyon of the Adirondacks”. The Chasm is a long, narrow sandstone gorge that stretches for two miles. In between the Chasm is the Ausable River that flows into Lake Champlain.

The trails and scenery are breathtaking. There is a rock that looks like an Elephants Head and stunning Rainbow Falls.

The Ausable Chasm offers many different adventures. Lace up your sneakers and enjoy a scenic walking tour of the Chasm. If you are feeling more adventurous, you can go rafting through the Chasm, which we did. Furthermore, if you are really daring, you can scale the Chasm. On the other hand, if you’re looking to relax, you can take a tube ride down the river.

The Details

  • Location: 2144 Route 9, Ausable Chasm, N.Y. 12911
  • Hours: The park is open year-round, except for major holidays. During the summer, the park is open from 9:00 a.m. to 5:00 p.m. The rest of the year, the park closes at 4:00 p.m.
  • Accessibility: Tours of the chasm are not recommended for people who have difficulty walking or climbing stairs. Strollers are also not permitted in the chasm.
  • Pets: The park does not allow pets. The park does allow service animals in the Welcome Center, and on the Elephant’s Head and Rainbow Falls trails.
  • Admission: Basic admission is $17.95 for adults and teens, $9.95 for children (age 5-12), and free for children under age 5. If you’re a resident of Clinton, Essex or Franklin Counties, admission is $9.00. You can also purchase optional adventure packages for an additional fee.

To learn more about the Ausable Chasm, visit the website: or call (518) 834-7454.

Don’t Miss

If you’re looking to explore all that the Ausable Chasm has to offer, consider camping at the Chasm.

Fairies find a new home in Mendon Ponds Park

Countless hearts broke earlier this year when dozens of fairies were evicted from their homes in Henrietta’s Tinker Nature Park following acts of vandalism. The beloved fairy trail featured beautifully crafted and brightly painted doors carved into both trees and various pieces of wood.

The good news – you can rest easy! The fairies are safe and sound in their new slice of paradise – the Birdsong Trail at Mendon Ponds Park.

I recently had the opportunity to check out the fairy homes. They are brand new and tailored to the park. The inhabitants were too shy to come out and say hello, but I was blown away at how skilled they are at carpentry.

Check out the photos below to see how our winged friends live.  Don’t worry, though – there are still plenty more houses and surprises I didn’t include!

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The Highlights

If you’re interested in visiting the Tooth Fairy or checking out the Troll Hole, gather up friends and family and make the trek to Mendon Ponds Park.  The Nature Center sits on the corner of Pond Road and Clover Street.  There’s plenty of onsite parking, so don’t hesitate to load up several cars with eager explorers.

The Birdsong Trail begins to the left of the Nature Center, just past a small grass field.  Once you reach the sign, just follow the path in a square shape. It’s only about three quarters of a mile. Let your eyes feast on the adorable community built into the bark.

Feeling adventurous?  Instead of following the square path, turn right once you’ve completed half the square to continue down the Birdsong Trail into other criss-crossing trails.  You can find a detailed map of the Mendon Ponds trails here.  No matter how far you walk, the fairy house trail is a great way to get up and moving with your loved ones!

The Details

  • Location: The Mendon Ponds Park Nature Center is located at 27 Pond Rd, Honeoye Falls, NY 14472. For more information, call (585) 334-6170.
  • Hours: 6am-11pm (park access varies seasonally)
  • Pets not allowed on the Birdsong trail.

Don’t Miss

Once you’ve caught the fairy house fever (like I have), be sure to stop by the Corn Hill Arts Festival on July 13 & 14, 2019. The 7th Annual Fairy Houses Tour at the festival will feature tons of tiny dwellings built by individuals who want to carry on the fairy house tradition. Stop by and vote on your favorite!

Zachary’s Story: Making a Difference in Organ Donation

“I don’t always want to be known as the kid with a heart transplant,” he said. “I want to be known as the kid who made a difference.”

Heart failure from a cold?

Last fall, Zachary Losee was in many ways a typical teenage boy. He lived in Monroe County with his family, a dog, a cat and two pet birds. He played volleyball and was on the school diving team.

Zachary on the varsity diving team.

One autumn day, Zachary came down with what seemed like a bad cold or the flu. He had a fever, body aches, coughing and a sore throat. A doctor told Zachary to rest and drink plenty of fluids.

The next night, Zachary’s health went from bad to worse. Zachary’s mom, Julie Prest, rushed him to the local emergency room. When he arrived, he could hardly breathe and started to collapse. From there, things started to move very quickly.

Suddenly, Zachary was being transported by ambulance to UR Medicine’s Golisano Children’s Hospital. At Strong, he was rushed to the pediatric cardiac care center. “It was a whirlwind when we got there,” Julie remembered.

Julie sat in the waiting room for several hours, not knowing what was happening to her son. Finally, a nurse came and told Julie that her son was experiencing heart failure with liver and kidney failure. Julie was floored, “From a cold?” she exclaimed. She didn’t understand how that could happen.

The lowest of the lows

Julie soon learned that Zachary did not have a simple cold, but had viral myocarditis. Viral myocarditis is a rare but serious condition. It occurs when a virus causes inflammation and damage to the heart muscle, making it difficult for the heart to pump properly. In Zachary’s case, the virus antibodies were detecting his heart as a foreign object and attacking his heart.

Zachary remained in the hospital as his body continued to fight the infection. Julie described Zachary’s time there as “a very emotional rollercoaster. It’s the lowest of the lows for any parent to go through.”

After several weeks at Golisano Children’s Hospital, Zachary continued to struggle, and his health declined. It was clear that Zachary was going to need further specialized care. On Thanksgiving Day, Zachary was transported by Mercy Flight to Morgan Stanley Children’s Hospital in New York City.

Zachary boards the Mercy Flight to NYC.

Two weeks later, on December 5th, doctors told Julie and Zachary that he would need a new heart because his heart was failing. He was placed on the organ transplant waiting list. The next day, Zachary had surgery for a left ventricular assist device (LVAD), a device that would help his heart pump blood to the rest of the body as he waited for a new heart.

Total shock

About 9,500 New Yorkers are currently waiting for an organ. Many have been on the waiting list for 5 or more years. Across the United States, about 14 Americans die every day waiting for an organ.

Amazingly, Zachary’s wait time was much shorter. After only one day, a doctor told Zachary and Julie that a heart was available. “Mom and I were in total shock that something so big could happen so fast,” said Zachary. Less than 24 hours later, a new, healthy heart was beating inside Zachary’s chest.

Afterwards, Julie described how it felt to meet the doctor who had performed the surgery on Zachary. “It was an overwhelming feeling to shake this man’s hand. To know there was so much knowledge, skill and delicacy in his hands. It was something I’ll never forget.”

Two little words

Zachary and Julie don’t know much about the donor who gave Zachary a heart. They don’t know if it was a man or a woman, an adult or a child. “The only thing we know is that the heart came from within a 500-mile radius of the hospital,” said Zachary.

They are planning to write a letter to the family of the donor. When asked what he thought he might say to the family, Zachary thought for a moment and then said “Two little words can mean so much…I would just say thank you. It means much more than people think.”

“We are really hopeful that we can meet this donor family that gave my son the greatest gift of all, which is to continue with life. He wouldn’t be here now if it wasn’t for that gift.” said Julie.

A second chance at life

Zachary said a heart transplant was “a second chance at life.” Since his surgery, Zach said he is feeling amazing and getting stronger every day. He’s looking forward to going back to school soon and getting back into volleyball and diving. After graduating, he plans to go on to college and study architectural design or cardiology.

He’s also working to spread the word about organ donation and the importance of joining the registry.

Zachary and Julie spreading the word about the importance of organ donation.

“You could save so much more than yourself,” said Zachary, about joining the registry.

“It’s such a selfless act that you can do,” added Julie, “and yet, it’s the greatest thing you can give anybody.”

The dire need for organ donors in NYS

New York state has among the highest need for organs in the United States yet ranks among the lowest when it comes to adults joining the organ donor registry. Only 35 percent of New York adults are registered organ donors, compared with 58 percent of adults nationally.


You can help make a difference by joining the organ donation registry:

  1. Sign up through the New York State Department of Motor Vehicles in-person or online at
  2. Sign up when you register to vote
  3. Enroll through New York state’s Health Plan Marketplace when applying for health insurance at
  4. Complete a paper or online registration form at

For more information on the dire need for organs in New York state, click here.

*Since this interview with Zachary, he has returned to school and is enjoying spending time with his friends and classmates.  

Bunny Tales: The Squirrels Ate my Eggs and Other Easter Stories

As with most holidays, there are favorite (and unusual) stories – and plenty of bloopers. Here are some of our favorites that we hope will make you chuckle or learn from our many mistakes!  Share your favorite Easter story – or bloopers – in the comments below.

The squirrels ate my Easter egg

One big lesson that Joy Auch of Ontario County learned early on as a young mother is to avoid hiding eggs in the yard the night before Easter.

“I was downstairs when I heard my hubby and 4-year-old son yelling from the upstairs window. Crazy squirrels were running away with the eggs. They only left a few of the 20 eggs we hid,” said Joy.

Her son took it well, rationalizing that there were still a few eggs left for him to enjoy.

“We found candy wrappers and pieces of plastic eggs all over the yard for weeks to come,” Joy added.

You light up my life

A self-professed Pinterest fanatic, Kelly Engert used an idea she found on the social media site last year. She put small tea lights, along with small trinkets, in plastic eggs and hid them outside. When dusk fell, her kids had fun finding the brightly shining eggs. Kelly, who lives in Wayne County, said that her family also uses Kool Aid and vinegar to dye their eggs. It makes for a more natural dye and is something the kids can make on their own instead of buying at the store.

“The colors are pretty cool and it even smells good!” she said.

Glowing Easter eggs

Better than candy?

Although most of Brittany Brownyard’s family members aren’t kids anymore, they still have that Easter egg hunt spirit.

“Once, my aunt hid eggs with numbers in them. After everyone found an egg, she told us the significance of the numbers,” said Brittany of Monroe County.

“Each one represented the dollar amount of a lottery ticket. So if you found an egg with a 5 in it, you received a $5 lottery ticket.”

So you can imagine the mad dash when Brittany’s’ aunt announced there was one egg missing.

“Everyone went nuts looking for it,” said Brittany. “The prospect of becoming the next millionaire made us all super competitive. Good thing there weren’t any small kids around, because they would have been shoved aside!”

When the last egg was finally found, it contained the number 1. And, no, nobody became the millionaire next door.

A true “hunt” for an egg

Elmer Smith of Monroe County offers this unique twist to the traditional Easter egg hunt: create clever clues to reveal the egg’s location.

On Easter morning, his son would pull pieces of paper from a basket. The papers contained clues to help his son find his Easter eggs. One favorite clue: “Go from Westminster to St. Michael’s, Lord Whittington.”

The clue wasn’t meant to confuse. Instead, it represented the three chimes on their triple chime mantel clock. (The egg was by the clock.)

His son had a lot of fun figuring out the somewhat quirky clues, which also helped to teach him about ways to think outside of the box.

The burnt Easter basket

As a young girl, Alicia Sherk of Erie County launched into her annual sisterly competition to find their baskets on Easter morning.

Her older sister found hers first. “Ha-ha! Born first, get the basket first!” she cried.

Alice’s younger sister found hers shortly after. “Choc-iittt!” said the little one, who was still learning to talk, but understood she won something fantastic.

Frantic and terrified, Alicia panicked. Did the Easter bunny forget a third basket? Her mom, meanwhile, began preheating the oven for their traditional cinnamon roll and chocolate Easter Sunday breakfast.

In minutes, the scent of chocolate wafted to their noses.  Alicia’s heart dropped. She ran into the kitchen, just in time to see her mom opening the oven door. There was Alicia’s basket, burnt on the edges and dripping chocolate onto the oven floor.

She cried. However, her sisters came to the rescue.

Each gave her pieces of their precious chocolate. Suddenly, Alicia was grateful for not being forgotten by the Easter Bunny. She was even more grateful to sit with her sisters and enjoy some chocolate with the cinnamon rolls.

(Yes, the Easter bunny that year did put the basket in the oven and then forgot about it!)

In your Easter bonnet with green grass growing on it

The family Easter bonnet parade started in Linnea Coyne’s family 25 years ago when her daughters were toddlers. Over the years, the bonnets have evolved from the simple to the sublime. The Dollar Store is the best place for supplies and you can use what you already have at home, such as tissue paper, old buttons, yarn, construction paper and old Easter decorations, said Linnea. A glue gun is a must.

“We’ve exhausted the peep populations, Easter basket grass and jelly beans with many of our creations,” said Linnea of Onondaga County.

Hat #1: The Daisy Hat

The first hat was a paper plate that was in the shape of a daisy for daughter Kelly. Coyne made two slits in the center of a paper plate and then threaded a piece of pink material through the cuts so she could tie it under Kelly’s chin.

“It was adorable,” Linnea recalled.

Hat #2: The Lawn Hat

Dylan, her son, started his hat a month before Easter by making a paste with grass seeds, spreading it on an old baseball hat and watering it religiously for four weeks. He topped the “lawn” with gummy worms and Easter eggs glued to golf tees.

Hat #3: The Picnic Hat

Linnea’s brother Marc completed an ensemble of a bonnet crowned with plastic dinnerware and a plastic tablecloth serving as his cloak.

“It’s become part of his spring picnic collection,” said Linnea.

“My kids love to see who comes up with most creative bonnet,” she said. “It was and is still a great way for them to use their imaginations.”

More relevant, however, is that the Easter bonnet parade always brings the family together, including newcomers such as Linnea’s new son-in-law, and makes for memorable holiday memories.

The kicker, however, is that Linnea’s mother “always manages to choose one of the creations to wear to church on Easter!”

Special eggs for a special bunny

Every year for Easter, Debbie Breinlinger of Erie County and her granddaughters create elaborately decorated eggs to be displayed next to a very special stuffed animal.

Debbie bought the stuffed bunny at the Steiff Museum in southern Germany. The museum is the birthplace of the teddy bear. One year, around Easter, Debbie was in Germany accompanying her husband when he met his brother for the first time. (The brothers had been separated early in life.) During the trip, she bought the bunny.

Want to make eggs like Debbie’s? Here’s the recipe:

  1. Wrap an egg in silk. Debbie uses 100 percent silk ties and scarfs she’s collected throughout the year.
  2. Place the silk-wrapped raw egg in a piece of white sheet, pillowcase or old tablecloth. Secure tightly with a twist-tie.
  3. Place the egg(s) in an enamel or glass pot.
  4. Fill pot with water to cover eggs completely.
  5. Add three tablespoons of white vinegar and cook for 25 minutes.
  6. Unwrap and enjoy!

“Watching the looks on my granddaughters’ faces when they see the egg designs for the first time every year is priceless,” she said.


Imagine RIT: Innovation and Creativity Festival

For many years, my family has not missed the Imagine RIT: Innovation and Creativity Festival. It is a great FREE, community event. You can check it out on Saturday, April 27, 2019, from 10 am to 5 pm.

Performance art, Herbology, and more!

First up this year is the announcement of the winner of the student performance art challenge. Other highlights on the schedule include “A Day at Hogwarts“: an immersion in Herbology, Potions and other classes from Hogwarts School of Witchcraft and Wizardry. We’re also excited to learn more about new uses for drones and explore an interactive exhibit about refugees in the United States.

There are favorite exhibits every year, such as climbing through oobleck, bicycle-powered smoothies, and learning about wetland wildlife. But we always stumble upon something surprising.

Photo Credit: RIT

Last year we spent most of our time in the science building, since it was raining. We tried virtual reality devices, saw a band perform, and visited the green house. We visited my husband’s students who organized a Jeopardy-style trivia game about astronomy.

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Another year at the festival, we learned how to “upcycle” by taking an empty plastic bottle and turning it into a planter. We also sat in a wheelchair and navigated a typical room to see how hard it is to accomplish many everyday tasks this way and how new innovations can help. There are also lots of hands-on math and science experiments to explore that never disappoint.

For our family, Imagine RIT is the first spring festival in Rochester and it is always great to see so many people enjoying the outdoors. About 30,000 people come to the festival each year, but it never feels crowded and we have always been able to park and move about easily.

Have you visited Imagine RIT? Tell us about your favorite exhibit in the comments section below.

How Parents Can Spot the Signs of Substance Abuse

Parents know there’s a lot to keep up with in the fast-moving world of teens. The latest trends in fashion, video games, music, social media …the list seems endless. But what about trends in drug and alcohol use? Would you know what they are, or what to look for?

Raising Awareness about drug and alcohol abuse

There’s help with that. “Hidden in Plain Sight, Telling Their Secrets,” a program developed by The Council on Alcoholism and Addictions of the Finger Lakes is designed to help parents, teachers and others learn about current local drug trends.

Even if your child isn’t using drugs or alcohol, this program provides information that is important for anyone who has a relationship with young adults.

“The purpose is to raise awareness and start conversations about drug and alcohol abuse,” said Timothy VanDamme, executive director of the Council on Alcoholism and Addictions of the Finger Lakes. “We all need to work together to raise healthy families and keep our children and community safe.”

Can you spot the warning signs?

I attended a recent presentation of the program. It began with a replica of a teen’s bedroom. There was a bed, a dresser and a desk with a chair. Clothing, food and drink containers were lying about. Pictures and “mementos” covered the desk and posters hung on the wall.

The contents of the room looked innocent enough.

Participants went through the bedroom and identified objects that could possibly warn of substance use. They looked closely at items on the desk and bed, and picked through the pile of clothes on the floor.

Amazingly, there were 49 items hiding throughout the small space.

Some warning signs of substance abuse were easy to identify:

  • A photo of a boy and his friends drinking
  • A bong
  • A small vodka bottle
  • A Juul (an electronic cigarette)

Girl with an electronic cigarette

Other signs weren’t so obvious.

The Signs that Went Unnoticed

Here are some of the items that I didn’t see or realize could hint at substance abuse:

  • A ping pong ball on the desk. What if there was no ping pong table in the home, or the teen didn’t regularly play the game? Could it be used for a game of “beer pong?”
  • “Bracelets” that could be used to smoke marijuana
  • A pipe disguised as a marker.

Photos are courtesy of Council on Alcoholism and Addictions of the Finger Lakes “Hidden in Plain Sight” presentation

  • Items that could hide drug paraphernalia or alcohol, like beverage cans with false bottoms and hats and undergarments with hidden pockets. To the uninformed, these items may never be identified. It was surprising to learn how easy it can be to purchase – or even make – some items.

Photos are courtesy of Council on Alcoholism and Addictions of the Finger Lakes “Hidden in Plain Sight” presentation

In addition to the search for warning signs in the mock bedroom, the program also provides education about the drugs that are readily available in our community, including marijuana, heroin, and fentanyl. Program attendees learn about what these drugs look like and how they’re used.

“The More I learn, The better parent I can be”

Russ Kenyon is a parent of teens ages 15 and 17. The program, he said, expanded his horizons.

“The more I learn, the better parent I can be,” he said. “I thought I would pick up on these things. I was surprised. Now I have a better awareness of things that I wouldn’t have thought twice about. I recommend any parent go through this, your eyes will be opened.”

Trends in substance abuse are always changing. Therefore, VanDamme and his team are always conducting more research and updating presentations, which he said is very worthwhile.

“With the opioid epidemic, alcohol consumption, vaping issues and other drug abuses we want to reach as many people as possible,” he said. “It’s our goal to witness a reduction in drug and/or alcohol use among the adolescents and young adults in our community.”

“Hidden in Plain Sight, Telling Their Secrets” is a free program. Participants should be 21 or older (due to program content). To register or host an event, call the Council on Alcoholism and Addictions of the Finger Lakes at 315-789-0310 or visit their website:

A Grandmother’s story: What you need to know about cystic fibrosis

On September 6, 2011, I was introduced to a beautiful new grandson named Owin. All outside appearances indicated that he was a healthy, handsome little man, and I remember being simultaneously thrilled, thankful and a bit taken aback by the new addition to our family.

What made me a little uneasy was his mom, Karee, matter-of-factly saying that “We would know for sure how healthy Owin was when the doctors completed their newborn testing.”

A few days later, Karee called our house to talk to her mom, Karen. “Mom,” she said (you could tell she was fighting back tears). “We got some news back from the doctor. Owin has cystic fibrosis.”

I remember looking at Karen with kind of a blank stare, not having any idea what cystic fibrosis was. This was my first introduction to the disease is as it hit home right in our own family.

Three years later, we had our next introduction to cystic fibrosis. It came in the beauty of a little girl, whose name is Rori. Rori is Owin’s sister.

From the moment Rori was born, I knew she was full of spunk. Unfortunately, we received the same kind of call as we had with Owin. A few days after her birth, we learned that Rori also has cystic fibrosis.

My grandchildren have undergone a lot over the years to keep their health in check. Along the way, I’ve developed a passion for educating others about the disease. My family and I are also doing what we can to help find a cure for this very difficult disease.

What is cystic fibrosis?

Cystic fibrosis is a genetic disease that comes from both parents, as each parent must carry at least one copy of the defective gene in order for a child to be born with the disease.

Each time two cystic fibrosis carriers have a child, the chances of the child contracting some form of cystic fibrosis are:

  • 25 percent that the child will have the disease
  • 50 percent that the child will be a carrier but will not have the disease
  • 25 percent that the child will not be a carrier and will not have the disease

Any abnormality in the cystic fibrosis gene is called a mutation. Currently, there are about 1,700 known gene mutations that can cause cystic fibrosis. Most testing for the disease only screens for common disease mutations. More than 30,000 people in the United States today live with cystic fibrosis, and more than half of those people are older than age 18. Approximately 1,000 new cases of cystic fibrosis are diagnosed each year.

Why is cystic fibrosis so difficult to treat?

Cystic fibrosis brings with it many different battles. According to the Cystic Fibrosis Foundation, It is a genetic disease that affects the lungs, pancreas and many other parts of the body. A buildup of mucus in a patient’s lungs clogs up airways, making it very difficult to breathe. This sticky mucus also traps bacteria and makes the person very susceptible to lung infections, lung damage and respiratory failure.

In the pancreas, the clogged mucus prevents the body from releasing enzymes used for digestion to break down food and absorb vital nutrients.

What are the symptoms?

Symptoms of cystic fibrosis include (but are not limited to):

  • Very salty tasting skin
  • Persistent cough
  • Frequent lung infections like pneumonia or bronchitis
  • Wheezing
  • Shortness of breath
  • Stunted growth
  • Poor weight gain regardless of appetite
  • Difficulty with bowel movements
  • Male infertility

What does a day with cystic fibrosis look like?

Each day, Owin and Rori take many different medications. The last time I was at their house, the top of their dishwasher was covered with pill bottles and boxes of medications, including pancreatic enzyme supplements to improve the absorption of nutrients into the body.

Along with these medications, the children also must work to keep their airways open with several breathing treatments and other therapies each day. Daily nebulizer treatments supply antibiotics to help them fight lung infections.

Both children have learned to do other things – such as playing a game or watching TV – while getting their breathing treatments.

Comparing the amount of medications that these children take every day to the three I take every other day sure makes my medication regimen seem like nothing to me.

Normal, active and energetic in every way

One of the many struggles that Owin and Rori’s parents, Karee and Zack, have every day is being sure that both children have enough salt in their diet. Children with cystic fibrosis have a higher concentration of salt in their sweat and need to replace any salt that is lost. Often, their water must include added salt to make up for the salt that is lost.

Rori and Owin Pelis with their parents Zack Pelis and Karee Perry

In spite of all this, Owin and Rori are two of the most normal, active and energetic children I’ve ever known. Now ages 7 and 4, Owin is in 2nd grade, and Rori is not in school yet. Owin has played soccer on a team at his local soccer facility. Both children love hiking, swimming and having picnics with family and friends.

Here’s why I support the Cystic Fibrosis Foundation

I hope this explanation of cystic fibrosis has helped show what the disease is all about and what people who live with it every day of their lives go through.

Because it’s so close to me and my family, we all have become very involved in supporting and raising funds for The Central New York Chapter – Syracuse Office of the Cystic Fibrosis Foundation.

Fundraising in Central New York for cystic fibrosis is a win-win situation, because the money raised in Central New York goes directly to the CNY Chapter of the Cystic Fibrosis Foundation. In other words, it stays here to benefit the people for whom we directly raised it.

For our family and for others who support the Cystic Fibrosis Foundation, we made a commitment to never stop fundraising and working toward a cure until “CF stands for CURE FOUND.” In a world where so much uncertainty exists, that’s something you can count on.

The Cystic Fibrosis Foundation is there and will be there for families like ours that have been affected by this disease.

If you’d like more information regarding cystic fibrosis, visit,, or search cystic fibrosis on

CF stands for CURE FOUND!!!!!!!!!!!!!

How one person used the NYC Marathon to support those with Down Syndrome

Jack J. Stout decided he didn’t like his weight gain and cholesterol numbers. What did he do to get healthy? He ran the New York City Marathon.

The New York City Marathon has been a dream for Stout, but it’s a challenging race to get into.

“Everyone thinks the Boston Marathon is the hardest race to get into, but it’s not. The New York City Marathon is a lot harder,” Stout said.

To qualify for the New York City Marathon, however, you have to be in an elite class of runner.  Stout doubted he’d be able to do that. He could enter a lottery for a spot in the marathon. But he had tried that before and it never worked out.

Stout went for a third option.

Down Syndrome: The right cause at the right time

You can enter the marathon if you commit to raising at least $2,500 for certain charities.

After years of working at Excellus BlueCross BlueShield, Stout said that option inspired him the most. His friends and coworkers were always volunteering in the community and fundraising for causes they believed in.

“My co-worker, AJ Hameline, has coached so many new runners here. Kim Christman has also committed so much time and energy into the community, it was inspiring.” Stout continued, “My team really added to the inertia of this.”

After being inspired, he decided to run for a cause. “I could never have had the courage to do this at any other company,” he added.

Stout partnered with an organization called LuMind RDS to raise funds for research and resources for those affected by Down Syndrome.  By getting involved, Stout became more aware of other organizations that locally support the Down Syndrome community.

Stout decided to partner with LuMind RDS because his best friend’s son, Simon, has Down Syndrome.

Jack Stout sharing his medal from the marathon with Simon, the inspiration behind his bid to run the event.

Stout had watched his friend’s family and learned of the challenges and support systems surrounding the Down Syndrome community.

“I had tried to run the New York City Marathon for almost 10 years, but I lacked motivation or the timing wasn’t right,” he said. “To have my Simon come into our lives, it provided me with an avenue to find that motivation and drive. This is the right cause at the right time, plus Simon is amazing; it’s impossible not to find ways to be supportive.”

 Why Stout pledged to raise $3,210 at the marathon

Stout signed up for the race and pledged to raise $3,210 to support those living with Down Syndrome. He picked that amount because Down Syndrome is caused by an individual being born with three of the 21st chromosome. The numbers three and 21 are meaningful in the Down Syndrome community.

At first, it was hard for Stout to ask others to donate money.

“You have to be humble enough to say, ‘I can’t do this alone,’” Stout said. “I was often almost apologetic at times when asking for support. But many friends said, ‘Jack, we aren’t doing this just for you, we are doing this because we want to do this, because it’s such a great cause.’”

On the day of the race, Stout surpassed his goal and was able to raise $4,655 for Down Syndrome research and support. The cause helped Stout to power through the race.

“I took on this challenge because I was inspired by Simon,” said Stout, who also had Simon’s name on his shirt during the run. “There were portions of the race when you’re really hurting, but hearing, ‘GO SIMON!!!’ gave me a huge lift.”

Another healthy twist to running the marathon

Stout said it felt surreal standing at the starting line after all the time he put into this effort.

“I spent a year preparing for this moment,” said Stout, who ran the race on Nov. 4, 2018.

“I ran more than 1,000 miles to prepare for this and now I am shoulder to shoulder with about 51,000 other runners who all gave up so much to get to this place,” he added.  “I felt so fortunate to be able to get to this place and be part of it with so many other people.”

Jack Stout at the marathon.

Not only did Stout succeed at raising funds for the Down Syndrome community, but he also improved his health by losing about 30 pounds and lowering his cholesterol by 50 points.

“It didn’t matter what happened during the race or what time I ended up running across the finish line,” he added. “My journey to get here was much more rewarding. You can always find reasons why you can’t or shouldn’t do something.  Just take the leap, be fearless and jump in!”

The Meaning Behind the Teal Pumpkin: Help for Children with Allergies on Halloween

Some of my favorite memories as a kid are from Halloween. I remember dressing up as a witch to go trick-or-treating with friends while hoarding  all of the peanut butter cups and refusing to listen to my parents when they told me to wear a jacket (Hey Mom and Dad – you were right about needing a jacket. Upstate New York gets pretty cold by the end of October). Thanks to food allergies, not every child is able to create those same memories. One in 13 children has a food allergy and Halloween can be one of the most frustrating and dangerous times of the year for them. But a teal pumpkin is trying to change all that.

The author dressed as witch, ca. 1998. Provided by Christine Leavenworth

The author dressed as witch, ca. 1998. Credit: Christine Leavenworth

The Teal Pumpkin Project

The Teal Pumpkin Project encourages people to provide non-food items for trick-or-treaters so that kids with food allergies can participate without facing risks to their health.  Some of the treats that are handed out include glow sticks, rubber balls, vampire fangs, etc.

Paint a pumpkin teal, put it on your front step the night of Halloween, and kids with allergies will know that your home is safe to visit.

A teal pumpkin indicates a house that is giving out allergy-safe items to children with allergies on Halloween. Credit: Christine Leavenworth

A teal pumpkin indicates a house that is giving out allergy-safe items to children with allergies on Halloween. Credit: Christine Leavenworth

Food Allergy Research & Education (FARE) started this international campaign in 2014 to “create a safer, happier Halloween for all kids.” It began as a local activity by the Food Allergy Community of East Tennessee that has morphed into an international awareness event.

“One bite of the wrong candy by these kids could cause life-threatening allergic reactions,” said LouAnne Giangreco, Vice President and Chief Medical Officer of Healthcare Improvement at Excellus BlueCross BlueShield. “We’re thrilled that our communities are rallying around these kids so that they can also indulge in special ‘treats’ and have fun, just like everyone else.”

A parent of children with food allergies is grateful for the Teal Pumpkin Project

Colleen Garofalo of Madison County is a mom to two kids who have food allergies. Her daughter is allergic to peanuts and her son is allergic to shellfish and tree nuts. Garofalo heard about the Teal Pumpkin Project from one of FARE’s email newsletters.

“As a parent, the Teal Pumpkin Project means inclusion,” said Garofalo. “There are so many times during school or birthday parties when my kids have to be careful about what they eat. They might feel left out if they can’t have something the other kids can have. The teal pumpkins allow them to have another option.”

Children with food allergies are now able to participate in Halloween thanks to the Teal Pumpkin Project.

Olivia and Anthony Garofalo are ready for an allergy-free Halloween. Credit: Colleen Garofalo

When Garofalo’s kids go trick-or-treating, they still collect all of the candy. But when they get home, they go through the candy to ensure that it’s safe to eat. She’s spotted a few teal pumpkins in her neighborhood, but hopes to see more as the word gets out about the campaign.

“The smaller candy that is handed out at Halloween doesn’t typically list the ingredients,” she said. “If I’m not familiar with the candy, it either gets thrown away or I have to research it to see if it’s OK for my kids to eat.”

“I’ve called manufacturers before to ask if a product that doesn’t contain peanuts is made on the same line as another product that does,” she added. “Then I have to ask about the cleaning process for the machines as well.”

Join the Teal Pumpkin campaign

Some of the most common allergens for children are nuts, milk, wheat, egg and soy. Many candies contain at least one of those ingredients.

If you would like to take part in the Teal Pumpkin Project and offer a non-candy treat to trick or treaters, you can either buy a teal pumpkin or paint your own.

Wegmans Food Markets, Inc., for example, sells paint specifically for the Teal Pumpkin Project. The paint can be found in the seasonal section, near the pumpkin carving kits, and a portion of the proceeds benefit FARE.

Teal pumpkin paint is available at local grocery stores, including Wegmans in Rochester. Provided by Joy Auch

Teal pumpkin paint is available at local grocery stores. Credit: Christine Leavenworth

“We are so happy to be able to support this initiative,” said Wegmans Nutritionist Trish Kazacos, RDN. “It’s a simple approach that allows children with food allergies to safely enjoy the holiday with their family and friends.”

Once you have your teal pumpkin, place it in front of your house to let trick-or-treaters know that you have non-food items available. FARE also provides free printable signs to explain the meaning behind the teal pumpkin and a list of ideas to give out to trick-or-treaters.

Supporting the Teal Pumpkin Project and handing out non-food treats doesn’t mean that you have to give up the Halloween tradition of giving out candy. You can hand out candy and allergy-safe items and then let the kids choose which one they’d like.

If you’ll be putting out a teal pumpkin this Halloween, be sure to add your address to the crowd-sourced fever map and let your local community know that you are participating.