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pediatric cancer

Photo: Fundraiser for Alex's Lemonade Stand at Valle's

By Howard B. Owens

alexslemonjune102016.jpg

If you visited Valle Jewelers today, you probably met Megan Williams, mother of Brady, 9, who was diagnosed with neuroblastoma at 20 months.

The Williams family of Oakfield is one of the Alex's Lemonade Stand Foundation families around the nation that raises money to help fight pediatric cancer. The family has raised more than $30,000 for the foundation, mostly through the lemonade stand they set up every year at Oakfield's Labor Days festival.

Today, as they did last year, Valle's donated 10 percent of all sales to the foundation. 

Plus you got a free cup of lemonade from Megan.

The foundation today had a goal of raising $1 million nationally, through the participation of 36 families, representing the 36 children diagnosed every day with cancer.

UPDATED: Oakfield's Williams family one of 36 selected nationwide as 'Lemonade Days Hero Reps' to help cure kids with cancer

By Billie Owens

Press release:

Oakfield resident and Childhood Cancer Hero, Brady Williams and his family, have been selected as Lemonade Days Hero Reps!

Alex’s Lemonade Stand Foundation selected 36 families across the country as ambassadors for their national fundraiser in June. Each family symbolically represents the 36 children diagnosed with cancer daily in the United States. 

Alex’s Lemonade Stand Foundation (ALSF), a nonprofit dedicated to finding cures for all kids with cancer, has selected 36 families across the country to take a “stand” against childhood cancer as Lemonade Day Hero Reps during Alex’s Lemonade Days, June 10-12.

The 36 Lemonade Days Hero Reps symbolically represent the 36 children diagnosed with cancer every day in the United States. Each family has been personally impacted by childhood cancer and will spread awareness about the ongoing childhood cancer fight by sharing their personal journeys.

These 36 families show that childhood cancer occurs regularly, randomly and spares no ethnic group; socioeconomic class; or geographic region. As a part of their Lemonade Days Hero Family duties, the families will each hold a lemonade stand during Alex’s Lemonade Days, spread awareness of their initiatives to their communities and enlist community members to host their own stands.

Meet the Williams Family

“Brady is the best brother in the world,” says his brother, Eli.

Brady Williams, diagnosed with neuroblastoma in 2009, is one in a set of triplets: Cara and Eli, ages 9. They also have a younger sister, Allison, age 7. The Williams family wants others to know that the impact of childhood cancer does not end when treatment ends. But Brady is optimistic saying, “Someday I will help make the world a better place!”

Alex’s Lemonade Days commemorates 8-year-old Alexandra “Alex” Scott’s challenge to help her raise $1 million for childhood cancer cures, one cup of lemonade at a time. With help from volunteers across the country, Alex reached her million dollar goal before losing her life to cancer in August 2004.

“Just like the Williams Family, our family knows firsthand just how personal the fight against childhood cancer is,” said Liz Scott, co-executive director of ALSF and Alex’s mom. “Our daughter would be honored to know that these 36 families will continue her legacy by literally taking a stand against childhood cancer and inspiring those in their community to come together toward finding cures.”

Now every year, volunteers are invited to host lemonade stands over the course of these three days in June to continue Alex’s mission and bring renewed attention to the fight against childhood cancer. Since 2004, more than 22,000 Lemonade Days stands have been held nationally, raising over $12 million. This year, the Foundation hopes to reach the 25,000th Lemonade Days stand.

Participants are encouraged to show support through social media utilizing #LemonadeDays on Twitter, Instagram, Facebook and more.

For more information on Alex’s Lemonade Days and to sign up to host a lemonade stand visit AlexsLemonadeDays.org.

***UPDATE JUNE 2: The Williams’ lemonade stand is from 9:30 a.m. to 7 p.m. on Friday, June 10, at Valle Jewelers, 21 Jackson St., Batavia.

'Run for the Gold' is Saturday in Le Roy to raise funds and awareness for pediatric cancer

By Billie Owens

From Laurie Napoleone:

On Saturday, Sept. 19th, the Michael Napoleone Memorial Foundation is hosting “Run for the Gold” to raise awareness and funds for pediatric cancer.

The 5K Run/Walk will be held in Le Roy starting at the Summit Street Tennis Courts beginning at 9 a.m. Registration begins at 8 a.m. The cost is $25 pre-race and $35 on the day of the race. T-shirts will be given to the first 100 runners.

New this year – a balloon launch. Buy a balloon in memory and honor of a loved one or just send a special note on one.

Gather friends and family and take a walk on a beautiful fall morning while making a difference in the lives of those affected by a pediatric cancer diagnosis. If you can’t walk, just join the foundation for a fun day in the lovely Village of Le Roy.

Register today at http://www.active.com/leroy-ny/running/distance-running-races/run-for-the-gold-2015?int or for more information go to michaelshope.org.

Hope to see you there!

Run for the Gold 5K Run / Walk

By laurie napoleone

The Michael Napoleone Memorial Foundation is hosting a 5K Walk/Run in honor of Pedatric Cancer Awareness Month. September 27, 2014. Registration 8am - Race at 9am. Begin at Tennis Courts - 40 Wolcott St. Leroy, NY. $25 per participant. Everyone welcome! Go to active.com to enter or go to michaelshope.org to download a mail-in registration form. All proceeds help the foundation "Lend a Hand for Hope" to those affected by pediatric cancer.

Event Date and Time

'BHS Talent Show' aims to help ailing child

By Daniel Crofts

Thomas Ackley, pictured right, was one of the younger students in Debra Wolff’s kindergarten class at Jackson Primary School last year. He was a little bit smaller than most of the other kids, and it took him a bit longer to catch onto the lessons. But his determination left a deep impression on his teacher.

“Once you showed him how to do something,” Wolff said, “then he wanted to do it all on his own. It was an absolute joy to see his spirit.”

So much of a joy, in fact, that Wolff presented Thomas with an award for his determination at the end of the year – even though he and his family had moved to Akron in March.

Something else happened toward the end of the school year as well. In late May, Thomas was diagnosed with cancer.

Thomas has Stage 4 neuroblastoma. He is now in remission, but has about six months of treatment ahead of him to make sure the cancer does not return. Emotionally and financially, he and his family continue to struggle.

That is why Batavia High School students, under the supervision of chorus teacher Dan Grillo, are giving all the proceeds from their upcoming Talent Show to the Ackley family.

The Talent Show, which features performances from both students and faculty, will be held at 7 p.m. Tuesday at the Batavia High School auditorium. The school is located at 260 State St. in the City of Batavia.

This annual event is run by students from the BHS chapter of the Tri-M Music Honor Society. 

“They’re the ones who run everything behind the scenes,” Grillo said.

According to Grillo, they run it like a musical – complete with a stage crew, a tech and lighting person, escorts for the performers, etc.

Each year, the Tri-M students aim to raise funds for a different charity or cause.

Grillo’s son, Sam (pictured with Thomas above), was good friends with Thomas. Knowing about the Ackley family’s situation, Grillo suggested them to his students as this year’s beneficiaries.

“They (the students) liked the idea,” Grillo said.

Most of the performances will be musical/vocal in nature; but there are a few surprises as well, including someone who plays the guitar and harmonica at the same time and a young man who does what Grillo calls “some pretty amazing yo-yo tricks.”

“I’ve never seen anything in front of my eyes (with yo-yos) as good as this young man is,” he said.

At the end of the night, everyone involved hopes to have raised enough funds to give Thomas some much needed help in his ordeal.

“He is a fighter,” Wolff said. “And he does it with a smile – it’s incredible to me.”

The show is open to the public. A donation of at least $3 is requested from each attendee. For more information, call the high school at 343-2480, ext. 2000.

Photo submitted by Dan Grillo

Batavia singer/songwriter has high hopes for very personal song

By Daniel Crofts

Batavia resident Lisa Barrett is hoping a lot of people will get online and vote for her song, "When You Look at Me," which has made it into round three of the international "Best Original Song" contest.

If she wins, she'll get her own Web page, and her song will be sent to dozens of recording companies, music labels (large and small), producers and agents.

Barrett's song was one of 100 from around the world chosen for the contest. Of those, 48 made it to round two and, you guessed it, "When You Look at Me" was one of them.

Now it's one of 24 that have made it to the third round. If Barrett makes it through this round, she'll be halfway to her goal of winning the competition.

Voting began this week and extends through Monday. In order to vote, go to www.bestoriginalsong.com and set up an account -- it's free and only takes a minute.

Barrett wrote and performed "When You Look at Me" in memory of her nephew, Austin, who lost a brave battle with cancer in February of 2000, just shy of his 2nd birthday.

"My goal is to touch people's lives with the music in Austin's memory," Barrett said. "I feel I'm doing this not only for Austin, but for all children who have lost their battles, or are still struggling with life-threatening illnesses."

She came up with the idea for the song about a year after Austin died.

"I walked by his picture, and this particular time I stopped (to look at it). My eyes met his, and I said out loud: 'I can almost feel your touch when you look at me.'"

According to Barrett, "something happened" in this instant that changed her life.

"It was like a switch went on. I heard a melody in my head, with the lyrics coming at the same time. I felt compelled to grab a pen and start writing."

It took her a few weeks, but when she finally finished the song it became, in her words, "a wonderful grieving outlet."

"After that," Barrett said, "the switch kept going on for other songs. Whenever something hit me hard emotionally -- whether it made me feel sad, happy, angry or it was funny -- I would write a song about it."

Her songs are not just about things that affect her directly. As she got further along in this new chapter of her life, she became inspired by other people's experiences as well.

In recent years, she wrote a musical called "Can't Bully Me Now," which deals with the experiences of children who are bullied in school. This song has been performed multiple times by students at St. Joseph School in Batavia, and educators from other districts have expressed interest in it as well.

The amazing thing is that prior to the composition of "When You Look at Me," Barrett had never been a songwriter.

"I didn't plan this. It's a path that has been laid before me, and I follow it, not always knowing where I'm going next."

Along the way, she has learned that "even after so much pain, the sun can shine again."

Originally recorded at Affinity Music in Nashville, Tennessee in 2005, "When You Look at Me" is part of an album with the same title. Barrett wrote and performed 10 other songs for this album, one of which -- "Share Your Light" -- was the theme song selection for Western New York's National Night Out in August 2010.

In an ironic turn of events, Barrett decided that the time had come to turn "When You Look at Me" into a music video around the same time that officials from Best Original Song contacted her. They had found her music online and were interested in having her as a contestant.

Barrett said she submitted her entire album. They chose "When You Look at Me."

"It was like everything was coming full circle. It brought back to me the reason I had done everything in the first place."

She and her husband, Kyle, filmed the music video this past winter at Genesee County Park. They were there one day, and found that the atmosphere was ideal.

"The snow was falling perfectly," Barrett recalls. "And I just said to my husband, 'We've got to do it now.'"

Shooting at the park in the winter was not easy. Barrett said her "toes were frozen" as she made this video.

But she kept going, and it was worth it in the end.

Have a look:

VOTING INSTRUCTIONS:

Once you've created an account and are logged in, click on either of the two bars on the home page that read "Live Show! Click Here to Listen," then click on "Third Stage Show #1." From there, you'll know what to do.

Remember, you only have from now through Monday to vote!

Final Note: Barrett's CD can be purchased through her Web site, www.lisabarrettcd.com. Portions of the proceeds benefit Essential Care, a pediatric home care program of Hospice Buffalo for children with life-threatening illnesses.

Top photo -- of Barrett at Affinity Music -- taken from www.lisabarrettcd.com, second photo submitted by Lisa Barrett.

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