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Webster resident reflects on cemeteries in her new book

25 Sep

I’m a sucker for cemeteries. They’re so peaceful. I love to just wander through them, enjoy the solitude, look at the epitaphs, and think about the lives they’re trying to sum up in just a few words.

So when I heard about a recent book about cemeteries written by Webster resident Jane Hopkins, I sat up and took notice. Then I started reading it, and realized that Hopkins and I are of the same mind when it comes to the power of cemeteries to touch us deeply.

The book is titled Cemetery Reflections, and it was sparked in part by a single, simple headstone. Hopkins was taking a walk in a historic cemetery in Canada a few years ago and came across the grave of a young child. The epitaph read, “Step Softly, Here lies a dream.” A much larger monument which stood nearby detailed the death of four children three weeks apart, and their father several months later. Hopkins writes in her book, “I thought about the dreams of these parents for their children, and the harsh reality that comes to many of us who experience an early death in the family.”

As Hopkins continued to wander the cemetery, she contemplated the deep grief expressed in the words on the child’s headstone. It compelled her to explore more cemeteries, perhaps, she wrote, “looking for a workable philosophy of loss and afterlife ─ including my own death ─ and how to  make it easier for those left behind.”  

The result of those wanderings is the new 206-page book, Cemetery Reflections, a visual journey through notable cemeteries, illustrated by stunning black and white and color photos. Historic poetry and beautiful prose accompany the photos, giving the book a free-flowing feel similar to what one would experience on a cemetery walk. 

You can meet Hopkins yourself and learn more about her book at a talk she’ll hold on Saturday, Oct. 1 at 2 p.m. in  the Gleason Auditorium at the Central Library of Rochester and Monroe County, 115  South Ave., Rochester. The talk is free and open to the public.

Copies of Cemetery Reflections are available for $44.95 at Amazon.com.   

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email me  at missyblog@gmail.com“Like” this blog on Facebook and follow me on Twitter and Instagram.

You can also get email notifications every time I post a new blog by using the “Follow Me” link on the right side of this page.

(posted 9/25/2022)

Florence Kinney, Webster’s “Mrs. Claus,” approaches amazing gift-giving goal

24 Sep

It’s only the last week in September, but Florence Kinney is already thinking about Christmas.

Actually, she’s been thinking about it and working on it for the last nine months, purchasing and preparing the thousands of gifts she’ll be delivering to children this holiday season.

Florence Kinney — or as some know her, “Mrs. Claus” — is the driving force behind a grassroots ministry which she calls “Santa’s Workshop,” dedicated to bringing presents to children who might not get many gifts, or anything, for Christmas.

The effort began very simply in December 1989, when Florence read a story in the Democrat and Chronicle about two brothers who were going to be spending their Christmas at Rochester General Hospital. After reading the article, she asked her husband Charles if they could go to the store and buy a toy truck for each little boy. He agreed; just one toy.

But after dropping the trucks off at the hospital, something kept nagging at Florence. So she asked Charles, again, if they could go out and get just a few more toys. He agreed, again, and they headed out to shop.

They came back with 400 gifts, which they delivered to 400 more children at the hospital.

That was going to be the end of it, Florence said. But word spread and they started getting calls from other hospitals, and a reporter called to do a story. When they told him they had no plans to continue, he encouraged them to pray about it.

“It was a very emotional moment for us,” Florence remembered. She and Charles stood in a corner of their kitchen and prayed. “Next thing we knew, this heat just rose right up from our feet, right through our body. We both started crying our eyes out, and I looked at (Charles) and said, ‘This is a calling.’”

Santa’s Workshop was born, and has grown every year, even after Charles passed in 2003. The agencies it serves have expanded well beyond RGH to include the Ronald McDonald House, Williamson Community Center, Cure Cancer Association, House of Mercy and a half dozen others, and the number of children and adults who receive gifts every year numbers in the thousands.

Last year, Santa’s Workshop delivered 4,889 gifts, bringing the total number of gifts since the first year to 97,506. This season, which marks the 33rd year, Florence only needs another 2,500 gifts to reach an incredible goal: 100,000 gifts delivered.

What’s especially amazing about what Florence does is that she receives very few donations. She basically goes out and purchases the thousands of toys and clothing items herself, with her own money.

Thanks to raging inflation and supply chain issues, purchasing enough gifts this year has been especially challenging. Money doesn’t go anywhere near as far these days, and it’s been difficult buying games in bulk quantities. But she’s persevered, and several rooms in her Webster home are already piled high with games, stuffed animals, dolls, books and toys, ready for the workshop to “open” in November, when her team of dedicated volunteers will start sorting, packing and delivering the gifts.

But Florence is still looking for bargains and buying gifts, because she’s bound and determined to reach her goal. “If we can make that 100,000, I will feel very good about it,” she said.

Last year when, Florence told me she was so close to her goal, I asked her if she’d be retiring once she reached it. She answered, “The only way I could do it is if God tells me that. He called me to it, he’ll call me away from it. I know that in my heart. It will be his decision to make.”

Turns out, she got that message. A couple of times. She told me,

A few weeks ago I was praying about it. I was led to go get one of my devotionals. When I picked it up and opened the page, you won’t believe what it said. The title was “Retirement?” It was all about how you never retire from the Lord’s work.

Before that hapened I was eating breakfast, looking out the window, and thinking about the last year. All of a sudden I heard “I have not called you from it. I called you to it.”

Sounds like Santa’s Workshop will be hanging around a little while longer.

(Click here to read more about Florence in the blog I wrote about her last year.)

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email me  at missyblog@gmail.com“Like” this blog on Facebook and follow me on Twitter and Instagram.

You can also get email notifications every time I post a new blog by using the “Follow Me” link on the right side of this page.

(posted 9/24/2022)

Webster’s very own “My Evil Twin” to perform at the Fringe Festival

15 Sep

Two former Webster Schroeder students (class of ’74) are teaming up at the Rochester Fringe Festival to perform a funny, fast-moving mini-musical, based on their lives growing up as identical twin brothers.

Jim and John Demler are both opera singers, so the show, which they call My Evil Twin, will naturally include a little bit of opera. But it will be blended with elements of Broadway and pop and (according to the Facebook event page), will “provide the twins the chance to unleash their virtuosic basso voices with madcap energy and emotion.”

The page describes My Evil Twin the show as

an intimate musical …. Funny, poignant, and adventurous, My Evil Twin exposes tenderness and vulnerability beneath masculine bravado as the twins tell the story of their lives in words and song. It is a tribute to sibling love.

Members of the Class of ’74 may remember Jim and John Demler, especially since John wrote they were both “above-average athletes,” albeit only “mediocre students.” They both played in the Ridgecrest Elementary orchestra under the baton of Jeff Frasier, and both went to school not to study music, but to become teachers.

The show we are performing at the Fringe Festival was written for us, and is a funny, brief chronicle of our lives as twins and performers. We have remained best friends throughout our 65 years, but this essentially the first show we’ve ever done where we’ve sung duets together.

My Evil Twin will be performed at the Geva Theatre Center on Wednesday Sept. 21 at 5:30 p.m. and Thursday Sept. 22 at 9 p.m. Tickets for the 75-minute show are $18 for adults, $12 for students. They can be purchased online here, by phone at (585) 957-9837 (fees apply), at the door or at the box office at the corner of Main and Gibbs.

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email me  at missyblog@gmail.com“Like” this blog on Facebook and follow me on Twitter and Instagram.

You can also get email notifications every time I post a new blog by using the “Follow Me” link on the right side of this page.

(posted 9/14/2022)

Webster man may be first ultra runner with Spina Bifida

9 Aug

Anyone who runs, even short distances, knows that running isn’t always easy. Too often, pounding the pavement means pushing through mental barriers, blisters and sore muscles.  

But that all pales compared to the challenges Mike Fitzsimmons has had to overcome. 

Mike Fitzsimmons was born on January 26, 1986 with myelomeningocele, the most serious type of Spina Bifida. His spine had not fused completely, and there was an open wound in his back where spinal fluid was leaking out. His parents were told that if their son lived, he’d be severely disabled, in a wheelchair and have no quality of life. Within 48 hours he had surgery to close the wound, but Mike’s chances of ever walking were still very slim.

But sometimes miracles happen. Today, 36 years later, Mike Fitzsimmons is not only walking, but is running ultra marathons, and so far is the only known person with Spina Bifida to do so. 

Mike was fortunate; all his life he’s had normal feeling in his feet, knees and ankles, and led an active childhood, playing sports of all kinds. But he didn’t become a runner until much later, when life started to turn very sour.

When he was 19 years old, Mike’s mother developed early-onset Alzheimer’s, and he became her caregiver. She passed away ten years later. 

“When she died, I was so lost and broken. I needed to do something,” he remembered. “I hated running, (but) I didn’t want to take Xanax, or get into drugs or booze. I thought, let’s just try this stupid running stuff everyone’s taking about.” 

For a while the running-as-therapy worked, at least a little bit. Then two years later, his best friend took his own life, and that made matters worse. He started running even longer distances. 

By the time COVID hit in 2020, running had become an important part of Mike’s life.  Setting a personal challenge to run a half marathon seemed like a natural next step, and a great way to get through the pandemic. To make it more interesting, he’d also journal about his experience on Instagram. 

“I didn’t even know what a hashtag was at that point,” he said. “I’m in my mid-30s, no one cares about what some middle-aged dude is doing, trying to figure out how to run a silly half marathon. But it was going to be cool for me. Like, Spina Bifida, half marathon, let’s see what it becomes.” And anyway, he thought, “no one’s going to find it.” 

Boy, was he wrong. 

The Instagram account started to blow up, drawing followers from both the disabled and long distance running communities. His fans cheered him on as he trained for and eventually completed the virtual 2021 Buffalo half-marathon, running the 13.1 miles through his neighborhood. He credits them – and his wife Amelia – for keeping him going.

Having accomplished that goal, he decided to take a break and ignore the Instagram account for a while. But he started to miss all of the friends he’d made there. So, with their encouragement, he signed up for the Mind the Ducks 12-hour ultra marathon, held in May at North Ponds Park, setting an ambitious goal of 50K (31 miles). 

Mike still has chronic problems with his kidneys and bladder, which makes managing hydration a serious concern and requires some extra preparation and precautions.  Despite that however, he finished his 50K – actually, 32.48 miles – in just over 7.5 hours. 

It may very well be the first time anyone with Spina Bifida has completed an ultra marathon. 

As the story of Mike’s running achievements has spread, he’s created a unique and inspirational connection between the running community and the disabled community. It’s a role he didn’t go looking for, but has come to embrace. He’s now determined to spread the word about the amazing things children and adults can accomplish, even with a disability.  

He especially wants to help change the negative perceptions medical professionals continue to have about the prognosis for those born with Spina Bifida.

“It bugs me that it’s still the narrative (for doctors and nurses) nearly 40 years later… I would just love it if a mom heard, ‘Yeah it might be really bad, but what if it’s really good? What if it’s amazing? What if they’re in a wheelchair, but maybe they’ll cure cancer?’” 

What he’s accomplished, he said, is a good example. “It just shows that you can do anything, be anyone.” 

“I don’t want to be ‘Mike the Spina Bifida Guy’ who runs crazy runs forever. It’s cool that it’s a part of it. But I also like music and hanging out with my wife.” 

A diagnosis of Spina Bifida does not have to define a person, he added. “There’s so many awesome aspects to all of us.”

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Mike Fitzsimmons isn’t slowing down yet. He’s already training hard for his next ultra, the 100-mile Dreadmill 48-hour Endurance Challenge in December. Matter of fact, the day before I talked with him he’d run a half-marathon. That’s 13 miles. With a broken toe. 

He’s using Dreadmill Challenge as a fundraiser for one of his favorite causes, Bella’s Bumbas, a Webster-based nonprofit dedicated to building miniature wheelchairs for children with a wide variety of mobility issues, including Spina Bifida. (Read more about them here.) 

You can follow Mike’s running journey, and read more inspirational stories, on his Instagram page (@mikecanrun). And if you’d like to throw your support behind his efforts, and support the incredible work that Bella’s Bumbas is doing, check out Mike’s GoFundMe page.

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email me  at missyblog@gmail.com“Like” this blog on Facebook and follow me on Twitter and Instagram.

You can also get email notifications every time I post a new blog by using the “Follow Me” link on the right side of this page.

(posted 8/9/2022)

My neighborhood lemonade entrepreneur is back!

24 Jul

Last year about this time I posted a blog highlighting a lemonade stand which had been set up just around the corner from me, at the corner of South Ave. and Park Ave. in Webster Village at the home of Doug and Patti Pucci.

The proprietor was 6-year old Nixie-Blu Howes, who was in town for a few weeks, visiting her grandparents. The very professional-looking stand, built by her grandfather, was brightly colored and sporting an open/closed sign, a flag and a pinwheel.

But probably the best thing about Nixie-Blu’s lemonade stand was that she was not charging anything for her lemonade. Instead, she was simply accepting donations, a portion of which she was donating to St. Jude.

Well, I’m pleased to report that Nixie-Blu and her lemonade stand are back this summer. She and her mother are visiting again for a few weeks, so the fancy wooden stand has been pulled out of storage and set up on the corner again.

Nixie-Blu has also brought back the same business model. Her customers decide what they want to pay for a cup of lemonade, and part of her earnings will be donated to St. Jude.

As you might expect given the very hot weather we’ve been having, business has been good. At one point, three cars had pulled off the busy road, the drivers lined up waiting for their lemonade. She even attracts customers who don’t want lemonade, like the teacher who came by and handed her some money simply to support her efforts.

Nixie-Blu will be in town all this week, and expects to open the stand for a few hours most of those days. So make sure to watch for her as you’re driving down South Ave., and consider supporting this budding entrepreneur.

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email me  at missyblog@gmail.com“Like” this blog on Facebook and follow me on Twitter and Instagram.

You can also get email notifications every time I post a new blog by using the “Follow Me” link on the right side of this page.

(posted 7/23/2022)

A little bit of Santa’s magic to brighten your day

6 Jul

I think we need to be reminded every once in a while that even during difficult times — and we’ve had a lot of difficult times recently — simple, magical moments can still happen to brighten our lives.

Such is the case with the following story, which I picked up from Facebook. It was recalled by my friend Jim Lockwood, “Webster’s Santa.” You’ve no doubt seen Jim in the village’s annual Parade of Lights at White Christmas, or maybe your kids visited him at the gazebo last year before the parade.

If you’ve ever had the good fortune to meet Jim, you know as I do that he actually is the real Santa Claus. There’s just something … magical about him and the effect he has on everyone he meets. I think this story which he shared a few days ago illustrates that.

He titled his story “Never Too Old.”

A few years ago I did a Christmas in July gig in one of the small towns in our area. It was a local Farmer’s Market set up in a large municipal parking lot.

It was a warm Saturday afternoon in July, not too busy, moms magically juggling bags of fruits and vegetables, going from stand to stand with children in tow, checking everything out. Children were asking, “Where are your reindeer?”, “How many elves do you have?” and “Why are you here in the middle of summer?” All good questions needing carefully-worded answers.

A young woman waited until the line dwindled, then came over to my chair and whispered that her elderly grandmother had never seen or talked with Santa. She asked if I would talk with her, if I had the time. Of course Santa has the time. I told her, I would love to talk with her grandmother. During a lull of a thousand questions she brought her beautiful grandmother over to visit with Santa. I think they were vendors at the market.

This young woman gave me one of the most memorable moments I’ve had portraying Santa Claus by bringing this wonderful soul to visit with Santa.

They say Santa is the spirt of Christmas, that he brings happiness and hope. I think they got it right!

Yes, she did tell me her Christmas wishes…

When I asked Jim if I could share his story in my blog, he wrote, “I was so humbled and honored to be the first Santa that she had ever visited.”

“She brought the joy and happiness that day. She was the Spirit of Christmas! I think her face tells the whole story.”

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email me  at missyblog@gmail.com“Like” this blog on Facebook and follow me on Twitter and Instagram.

You can also get email notifications every time I post a new blog by using the “Follow Me” link on the right side of this page.

(posted 7/6/2022)

Who WAS Jon S. Gerling? I’ve found out more about him

3 Jul

Last August, I posted a blog about a small memorial located in Ridge Park, just steps from busy Ridge Rd., and next to Challenger Miracle Field. It was erected decades ago, but I had only just noticed it recently.

The memorial was created in honor of Jon S. Gerling. After discovering it, I tried to do a little research into Mr. Gerling, with limited success. So I tossed the blog out there reporting what I had discovered, and ended it by asking for anyone with more information to contact me.

It took several months, but earlier this year I heard from Rob Gerling, Jon’s son, who filled me in a little more about his father’s background and why the memorial was placed there.

He wrote,

You are correct my father is Jon S. Gerling, and you are correct he was very active in the Webster Athletic Association. Prior to his death my brother and I played baseball in WAA and my father was both a coach of teams and commissioner of the league. After his death the baseball field by the Town Hall was dedicated in my father’s name.  

Rob added that Jon was the son of Curt Gerling, who at the time owned Empire State Weeklies, which published many weekly newspapers in the area including the Webster Herald. Curt was also an author (having written three books on Rochester society and an autobiography), and an early WXXI-TV personality.

In a follow-up email, Rob provided even more background about his family and life in 1960s Webster, writing,

(My father) grew up in the Rochester area, went to Brighton High School, and graduated in 1959. He attended Furman University in Greenville, SC, although only went for a couple of years.  He married my mother, Sheila Siede, in December 1961. Myself and my brother Jim, followed in 1962 and 1965. 

My father and his brother Bill both worked for my grandfather at Empire State Weeklies in Webster (now owned by Dave Young). Dave was there when I worked a few afternoons when they printed the papers on Tuesday afternoons.

My father was active in local sports, the Webster Athletic Association, with my brother and myself, up until his passing. My father along with his father was an avid outdoorsman. He enjoyed duck and pheasant hunting and fishing on Sodus Bay, where Curt Gerling (his father) had a hunting cabin. The place on Sodus Bay has since been sold.  While at Empire State Weeklies, my father sold advertising space in the various papers to local businesses where the paper was distributed.

His Brother Bill passed away in the early 2000’s and he also worked at the paper. He, like Curt, was very active in local Rochester politics. My father, not so much. 

Webster was a different place in the 60s and 70s growing up. We would go to Wegmans, Al’s Pizza, Musclow’s, Charlie Riedel’s and GoldenWest for a big night out on the town. There was a drive-in and a bowling alley. The town has changed in the last 50 years. 

My father is buried at West Webster Cemetery … He is buried with my father’s family, while his father Curt, and brother Bill are buried at Holy Sepulchre Cemetery in Rochester.

Many thanks to Rob for helping us know more about Jon Gerling and how he — and his family — made their mark in our town.

Click here to read the original blog I posted about the memorial.

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email me  at missyblog@gmail.com“Like” this blog on Facebook and follow me on Twitter and Instagram.

You can also get email notifications every time I post a new blog by using the “Follow Me” link on the right side of this page.

(posted 7/3/2022)

Annual Webster High School Alumni Dinner hosted 52 graduates

19 Jun

If you were a student of Latin at the old Webster High School (now Spry Middle School) back in the mid-1940s, you might remember the day that Miss Marie Stone wore a set of wax teeth to teach her Latin III class. It was her response to some good-natured shenanigans perpetrated by her students the previous day.

Unfortunately, that happened to be the same day the superintendent decided to visit the class for a surprise observation.

That was just one of many memories shared on Sunday June 12 at the Webster High School Annual Alumni Dinner. The dinner has been held every (non-COVID) year for more than 20 years, and this year was attended by more 52 graduates (and their guests) representing 12 classes from 1948 through 1962, the school’s last graduating year.

The event has been held at several different locations, including Casey Park, Webster Park and the Knights of Columbus Hall. This year’s dinner was graciously hosted by the Webster Golf Club.

The program began with greetings from Alumni Committee Vice President Jude Beh Lancy (class of 1959) and President Linda Briggs Auer (class of 1959), followed by dinner, a short business meeting and a centerpiece raffle. Recitation of the school’s Alma Mater concluded the official event, but there was plenty of socializing before everyone left for the evening.

After the dinner concluded, Lancy also acknowledged the many people and businesses who helped make it a success, including Dave Tiberio at Webster Golf, who carved out some Sunday afternoon hours for the dinner to be held; Kittelberger Florist for donating the centerpieces; Hegedorns and Lala of Webster for donating raffle prizes; and Dave Eckler at the Weekend Printer for printing the invitations and program.

It sounds like it was a great evening, and I’m sure everyone is already looking forward to next year.

Here are a few photos, courtesy Linda Auer:


I thought you might be interested in reading the entire story about Miss Stone and her wax teeth. It came from a scrapbook which Mary “Pappy” Pantas (class of 1946) put together about her years at Webster High, and donated to the Webster Museum.

She wrote,

Anyone who has taught school knows the last period of the day is the hardest to deal with. Such was the case of Miss Stone’s Latin III class. The subject is dull, the students are restless, etc. Those of us (who haven’t always done our assigned translations) loved getting Miss Stone off the subject and often got the class laughing by cutting up.

One day Miss Stone had had enough and she said to our little circle of class clowns, “Tomorrow if you kids say anything to get the class laughing and off the subject you will suffer the consequences.” This was seen by all of us as a challenge.

Putting our impish heads together, we thought about it. “She said if we SAY anything. What if we DO SOMETHING and SAY NOTHING?” A trip to Bowman’s the next day during our lunch hour and a purchase of several sets of wax false teeth was all that was needed for our perfect prank. Eighth period came and at a pre-designed time, those of us perpetrators turned around to look at the clock and inserted our wax “CHOPPERS.” LAUGHTER ERUPTED! Miss Stone could not follow through with her threat because we did not SAY anything!

The following day we filed through the glass window-paned door. Miss Stone was seated at her desk with a hanky covering her nose and mouth. After taking our seats, she arose and, lo and behold, she had a set of wax teeth in her mouth. She proceeded to teach the class!

But that wasn’t the end of it. A figure of a rotund, bald-headed man appeared at the glass door and entered our classroom. It was none other than Mr. Rayfield, the Superintendent of Monroe County Schools who had come unannounced to observe Miss Stone and her class!

Miss Stone was flabbergasted and frantically worked at removing her teeth. We learned later that she had spent much of her free period before our class working hard to mold her “teeth” so she could speak without losing them. What an ending to our “perfect prank.”

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email me  at missyblog@gmail.com“Like” this blog on Facebook and follow me on Twitter and Instagram.

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(posted 6/19/2022)

A sad farewell to the Special Police

24 May

In the years I’ve been writing this blog, I’ve met countless wonderful people; business owners, residents, special event chairpeople, grass-roots organizers. Together, they comprise the fabric of our community.

Through those years, and all those people, there’s always been one constant: the Special Police.

At every one of our town’s special events, I’d invariably see these dedicated volunteers helping with crowds and traffic control, and directing traffic at accident scenes. I’ve always appreciated their expertise, professionalism and good nature.

That’s why I was saddened to hear that Webster’s Special Police Department was being eliminated.

I heard rumors a while ago that such a decision was in the works, but I guess I was hoping I’d heard wrong, or at least something could be worked out with the Town to salvage this important service. But then, a few days ago, I got an email from Michael Charland, the most recent Chief of Special Police, confirming that the department is truly gone.

Michael gave me some background about how the whole thing went down. I’m not going to get into detail about that and the politics that were involved. (To read more of the story, check out the letter to the editor in last week’s Webster Herald.) But he did include some history which I thought was interesting.

He wrote,

Our unit began as the Webster Auxiliary Police under NYS Civil Defense guidelines back in 1953, and evolved into a Special Police organization in 1997 when the NYS Town Laws were changed. We generally had about 25 volunteer officers that served the Webster Police Department in law enforcement roles whenever called upon to do so. All of our officers were trained at the Monroe County Public Safety Training Facility and certified as NYS Peace Officers.

The town never fully utilized all of the powers that NY State granted to us over the years. Typically they utilized our members to do more routine duties such as traffic control, some patrol details, or provide security at large public gatherings, which we were happy to do. Other duties included providing court security to the town justice court, and 24/7 emergency response to fatal MVAs, storms, crime scenes, etc. where we generally provided a secure perimeter for the WPD to conduct their work. 

I’m going to miss not seeing Special Police officers at our special events. Like the upcoming Memorial Day Parade; they’d always be there in force, on bike and on foot, and they were always happy to smile for my camera.

Thank you for your service, Special Police officers.

Here are some of my photos from previous blogs, and a few provided by Michael.

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email me  at missyblog@gmail.com“Like” this blog on Facebook and follow me on Twitter and Instagram.

You can also get email notifications every time I post a new blog by using the “Follow Me” link on the right side of this page.

(posted 5/24/2022)

Local organization shares Moonshadow’s Spirit to help those with eating disorders

23 May

I learned something the other day, a fact that just blew me away: eating disorders — specifically Anorexia Nervosa — are the second leading cause of death for mental illnesses.

That was just one of the many eye-opening things I found out last week when I sat down for a conversation with Sharon Mathiason to talk about Moonshadow’s Spirit, the Webster-based nonprofit organization she and her husband David created to honor the memory of their daughter Jennifer.

Jennifer struggled with an eating disorder for 10 years, which began when she was just a teenager. She eventually recovered, but she also suffered from extreme depression, which often accompanies eating disorders, and passed away in February, 2009 at the age of 26.

Jennifer was very proud of her recovery, and had become committed to sharing her story. She spoke to junior high school classes and through online forums — using the pseudonym “Moonshadow’s Spirit” — encouraged other sufferers to seek out treatment and fight the tough fight.

After Jennifer passed, one of Jennifer’s closest friends told Sharon and David that their daughter was worried people couldn’t get treatment because they didn’t have insurance or couldn’t pay for it. After hearing that, figuring out a way to honor Jennifer’s memory wasn’t a huge leap. Moonshadow’s Spirit, Inc. was born, its mission to offer financial assistance to individuals with eating disorder diagnoses who are seeking treatment.

Just one year later, in March 2010, Moonshadow’s Spirit presented its first financial award, and has continued to hand out awards every year since. (They actually just celebrated their 100th donation.) The checks have gone to treatment centers all over the country, helping patients as young as 11 and as old as 60.

The awards, handed out quarterly, have ranged from $500 to $7,000 depending on need and how much money the organization has on hand. They’d like to hand out even larger checks, but raising funds, Sharon said, is slow going.

“Raising money is not easy for a nonprofit,” she said. “If we were helping dogs and cats we’d raise ten times more money than we do trying to help people. That’s kind of blunt but it’s true…. It’s hard to get people interested in eating disorders.” 

Sharon has recently expanded the organization’s mission to include education. She speaks at schools as far away as Hamburg (near Buffalo) and LeRoy, and twice every year visits the health classes at Webster Schroeder and Thomas high schools, accompanied by young people who are in recovery. They share their stories and some frightening facts about a disease which is too often hidden from view.

That fact I led my blog with? That was just the tip of the iceberg of the surprising things I’ve learned in the last few days. For example:

  • 11 million people in the United States have an eating disorder.
  • Almost half of all Americans know someone with an eating disorder.
  • 11% of high school students have been diagnosed with an eating disorder.
  • About 30% of diagnosed eating disorders are in males. Most males are probably undiagnosed; they tend to over-exercise, which is a form of bulimia, but not all doctors see it.
  • Only 30% of medical schools offer eating disorders as an elective.

Visit the Moonshadow’s Spirit website for more information about this surprisingly common and deadly disease. You’ll also find a link there where you can donate to help fund the fight. And if you’d like someone to come to your meeting or organization to talk about eating disorders, email Sharon at info@moonshadowsspirit.org.


It’s a party!

Sharon and David and the Moonshadow’s Spirit team would like to hold a small party to celebrate handing out their 100th check. They want to get a cake and share it with everyone at some community event. If you have any ideas on where they might be able to do that (without having to jump through too many hoops), please email Sharon at info@moonshadowsspirit.org.

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(posted 5/23/2022)