Making an Impact in the Midst of a Pandemic: PART 1

Dear Variety Friends:

I trust you and your family are all safe and well during this challenging time.

As I take time to reflect, I am truly grateful for all your support over the years and for believing in our work to change the lives of kids with disabilities.

With thanks, I want to send you a series of emails (starting with part 1 today) about the impact we’re having during the pandemic because I thought you would especially appreciate it.

In the midst of this pandemic, I have been inspired and had my life changed by a 17-year old named Corey, who is unstoppable!

This is one of the most incredible stories I have ever shared with you and amazing on many levels. I am sorry it is long… but I guarantee that you will be so grateful that you took in the whole story.

Corey is pictured above with his parents.

Critical background:
Corey receives therapy services and educational programming at Leg Up Farm in York County, Pa.

He had never ridden an adaptive bike until he rode one at Leg Up Farm.

Ever since, he wanted to have one at home, and he was scheduled to receive an adaptive bike and communication device at Leg Up Farm on April 3rd. Every day, he would ask his Speech Language Pathologist, Lu, Is my bike there? Is my bike there?

Corey’s mom, Michelle said that she and her husband (retired army) both love riding bikes, and were excited about the possibility of being able to ride with Corey as a family.

This opportunity to ride together has even more importance because Michelle is battling cancer and currently receiving chemotherapy. She wanted Corey to get the bike while she was healthy enough to ride with him.

April 3, 2020:
The presentation at Leg Up Farm was cancelled because of the pandemic.

Michelle was disappointed about having to wait for the bike, but also that Corey would not receive his communication device because, “Corey is partially verbal – he tries to say everything he reads and tries to communicate, but it is hard to understand him, which is where the device really helps him.”

April 9, 2020:
Michelle approached Lu, who called us, and with Corey’s Occupational Therapist, Nicole, and the leadership of Leg Up Farm, we created a way for Corey and other kids to receive communication devices and adaptive bikes in the middle of the pandemic!

May 9, 2020:
The Saturday before Mother’s Day, Corey received his new communication device thanks to a Special Delivery by Lu to his home.

Corey is pictured holding his new device, which came as a special delivery at his home!

May 15, 2020:
Corey received his adaptive bike at Leg Up Farm.

Corey is taking his new bike for a ride with his dad beside him!

Michelle said, “Thanks to the bike and the device, Corey is making connections with neighbor kids he didn’t have before. This has meant the world to him. He just spent the last two hours playing with kids he has never played with before until now, and they live right around us.”

Tuesday, May 19, 2020:
Corey’s SLP Lu sent us an update, “I am just amazed at how he has blossomed in the last couple days with both the bike and the talker. He so desperately wants to have friends and that bike has given him a way to meet them. Instead of just watching them, now he is joining in. Variety didn’t just give him a bike, it opened up a whole new world for him. Variety has truly made a difference in his life!”

Check this out – here’s a video that Corey filmed himself from a Zoom meeting with Lu and his mom.

And to top it all off!

After only having his device for 10 days and his bike for 5 days, Lu said,  It really was wonderful to see him being so independent with his device. He knew exactly what he wanted to tell you and he wanted to do it completely by himself. Now that he’s seeing just how much he can do by himself, he is gonna be unstoppable!”

Does it honestly get much better than this – that in the midst of a pandemic, in partnership with the therapist and his parents, Corey is becoming empowered to live a dramatically different life.

COREY, THE UNSTOPPABLE… I love it!

Take good care,

Charlie

Charles P. LaVallee
Chief Executive Officer
Variety – the Children’s Charity

Health Care Reinvented – My Voice Program

Variety was fortunate to be a guest on the Pittsburgh Technology Council’s podcast, Tech Vibe Radio, hosted by PTC’s Audrey Russo and Jonathan Kersting, who help make technology relatable to us all.

The two masterfully highlight what our My Voice® Program is all about and the impact that it is having for kids and families, so please don’t miss listening to Health Care Reinvented: My Voice Program – start listening and get inspired!

Not sure what to expect from the episode? Here’s how PTC describes it:

We couldn’t be more excited to release the next episode of Health Care Reinvented with Allegheny Health Network and Highmark Blue Cross Blue Shield.

This episode overviews the My Voice® Program with Charlie LaVallee of Variety detailing how cutting-edge technology is giving children who cannot speak a voice! It’s hard to imagine a child that is hungry and can’t ask food or a child that is hurting and cannot ask for help.

Listen to how the My Voice Program is putting powerful communications tools into children’s hands and giving them the ability to speak. Charlie has several heart-felt examples of the program making a life-altering difference for the children and their families.

A massive thanks to the Pittsburgh Technology Council (especially Audrey and Jonathan) for supporting and believing in our work, as well as Highmark and the Allegheny Health Network, who helped to make this opportunity possible.

Checking in with A SMILE!

Tree of Life Rabbi Myers was on GMA this past Friday morning, and he made a terrific point when he said that we need “PHYSICAL distance from others at this time but SOCIAL connection.” Such a good point that we need social connectedness. We are grateful for our connection and all that we have done and are doing for kids with disabilities.

At this challenging time, we wanted to send you a small reminder about the power of a smile.

Issac makes me smile because I know that he has a communication device to not only help him find freedom in communication, but, as his mom describes below, it will help to lessen his own daily frustration.

Issac and his parents are all smiles with his new device!

Issac’s mom, Morgan describes why this device is needed, “Issac’s functional communication has always been a struggle, and it is clearly a source of frustration for him when he tries to communicate but can’t find the words he needs.  Since he started speech therapy, Issac has continued to develop a vocabulary of useful words for requesting objects and observations. With this equipment, we can continue to support Issac as his vocabulary grows, and it is our hope this will help decrease frustration.”

Issac checking out his new voice!

Let’s strive to keep our social connection and find every moment to SMILE!

“Watching Your Child Struggle is One of the Hardest Things.”

When 4-year old Nik received his communication device, he was BEAUTIFULLY surrounded by his  parents, siblings, grandparents, and even his aunt and uncle. All of whom came to the presentation to celebrate this life-changing day and to show their commitment to helping him every step of the way.

Nik is pictured above surrounded by his family, as he receives his new communication device!

Nik’s mom, Nikol gave us perspective to why she was originally hesitant to try a communication device, and the impact it has since had on her son,

“Watching your child struggle with something is one of the hardest things. Especially when that struggle is with communication.

We as Nikolas’s parents… growing up… we would never think twice about being able to verbally communicate. Something, we feel we took for granted.

We have tried to be so proactive with helping him communicate. When Nik’s speech therapist asked us about utilizing an iPad in class to help Nikolas, we had a concern that it would hurt more so than help Nik. ‘Would he use the iPad and not want to try to speak?’ We were worried, but after support from his teacher and speech therapist, we decided to try it.

To our surprise Nik seemed to come home, almost daily, and it felt like he was able to verbally communicate more that day or week than the last. Janet asked if we were interested in having one at home and without hesitation we happily said ‘YES!’

To have Nik come home and not struggle with verbally communicating his wants as much, whether picking up more words or utilizing the iPad, would be such a blessing.”

After receiving his device, Nikol sent us this 30-second video of him using it to tell her what he wanted:

Thank you for believing in Variety’s work and helping us, help more kids.

A 1-Minute Update… Try Not to Smile!

MEET HAZEL

Hazel is all smiles above with her mom!

3-year old Hazel was all smiles, as she checked out her new communication device (and ate a tangerine). She received the device last Tuesday through Variety’s My Voice® Program, and we are still beaming with joy for her and her entire family.

Her mom, Mary told us,

Hazel wants to communicate. She tries so hard to tell us what she wants and what she’s thinking, but she runs into the limitation of her ability very quickly. While Hazel communicates with sign language, she only has about five spoken words, and it’s very difficult for her to form words.

A device like this would be life-changing for us, as it would give her another way to speak to us, and it would give her a consistent aid in hearing spoken words to help her build her own vocal abilities.”

This communication device is a tool for kids like Hazel to find their voice, and be able to express their wants, needs, and feelings to those around them. I don’t know about you, but I would love to hear what Hazel has to say now with her device!

A Truly Phenomenal Day In Schuylkill County!

On Monday, January 20th, Variety held its first presentation of equipment in Schuylkill County in partnership with Schuylkill Intermediate Unit 29, organized labor, and many other community partners. It was a phenomenal day, as Variety presented 28 adaptive bikes, 3 adaptive strollers, and 32 communications devices!

For 11-year old twins, Madelyn and Kaylynne, it was an especially memorable day, as these sisters both received their very own adaptive bikes!

Madelyn also received a communication device, and the first thing she said to her mother through the device was, I NEED CAKE,” because she wanted to celebrate the new bikes and her communication device (her new voice)

Madelyn showing off her new voice.

A few hours later Monday night, I received this photo from her mom (below), and they were celebrating the day with CAKE!

Madelyn celebrating the day with some cake!

This may seem like a little thing, but it was HUGE for this family.

A tremendous thanks to the IU29 staff who were incredibly motivated and are already planning for our next presentation to keep the momentum going! This is a powerful example of how kids can be identified and provided with life-changing equipment, even in a predominantly rural county like Schuylkill.

Additionally, we received great media coverage to help you share in the joy of the day – see below.

Thanks so much for sharing in the joy of our kids and families.

P.S. I hope that you’ll have some CAKE this week to celebrate with Madelyn and all our kids! The Variety team celebrated right away!

There’s always time for cake!

SPRING TOUR Provides 347 Pieces of Equipment Worth $526,000!!

SPRING TOUR BREAKS VARIETY RECORDS TO HELP MORE KIDS!

We’re thrilled to share that Variety’s Life-Changing SPRING TOUR presented a total of 347 pieces of adaptive equipment to children with disabilities over 18 separate stops throughout our service area.

Specifically, we provided 147 adaptive bikes, 128 communication devices, and 72 adaptive strollers worth $526,000 between April 1st through June 18th — and we couldn’t have done it without our incredible partners, supporters, and friends!

Together… we gave MORE SMILES,

Three of the many kids that received new adaptive bikes!

MORE CHANCES FOR COMMUNITY,

Three of the many kids that received new adaptive strollers!

AND MORE OPPORTUNITIES FOR LIFE!

Three of the many kids that received new communication devices!

A historic amount of equipment was presented over the last two and a half months, and we couldn’t have done it without our community of committed helpers. Thank you for sharing in the joy of our work and helping us to make sure that more people know Variety exists, so more kids receive this life-changing equipment.

Maximizing Possibilities One Child at a Time

This is Effie, who received an adaptive bike AND communication device through Variety. Now… she’ll have voice to communicate their thoughts and feelings, as well as a bike to be included and have fun with their friends / family! Read below for more on this extraordinary girl.

Effie is all smiles with her new device!

4-year old Effie first received her adaptive bike through Variety this past April, and then just this past Tuesday, Effie got her new communication device!

Her mom, Erin described to us during the presentation why this device is SO important, and as a father / grandfather, it was hard to take in.

“Effie got hurt at school. The teacher knew something was wrong. The teacher called me right away and I too knew something was wrong as soon as I saw Effie, but Effie couldn’t tell us what was wrong.

We took her to the doctor – who knew something was wrong and that she was in pain, but Effie couldn’t tell us. It took four days and three doctor visits to figure it out — Effie had a fractured leg. We got her the treatment and she is a happy girl again… With her new communication device, hearing her interact with her family and friends will be terrific and to get to know her will be amazing!”

Erin also gave us an update on how the bike has impacted Effie and her family, “Now, we go to North Park and go on the bike trails where everyone else is riding. Effie does it by herself – just like everybody else. She is riding, and it is AMAZING… thank you for what is a life-changing opportunity for our daughter.”

Left is Effie on her bike at the presentation — Right is Effie riding her bike at the park.

Not only did we provide Effie with a bike that she’s able to ride, but we provided her with a voice that she can use at all times. It’s our hope to provide this equipment to every eligible child that needs it, and to maximize their possibilities in life!

Two AMAZING DAYS w/ AIU8 & AIU3!

Recently, we had two incredible presentations with the Allegheny Intermediate Unit 3 on Wednesday, May 22nd and the Appalachia Intermediate Unit 8 on Monday, May 20th to present adaptive bikes, adaptive strollers, and communication devices!

Allegheny Intermediate Unit 3:

Excitingly, we held our first presentation in partnership with AIU3, and their team went all out to make the day extra special with balloons and a welcoming warmth. We presented 13 adaptive bikes, 3 adaptive strollers, and 3 communication devices, as well as fit 4 more kids for bikes.

We were especially grateful to have Allegheny County Executive Rich Fitzgerald and Pennsylvania State Senator Pam Iovino join us for the special day and celebrate our kids.

Children like 8-year old Sam (above left) and 7-year old Ella (above right) received their own customized adaptive bikes, and they couldn’t have been more excited!

Sam’s mom, Danielle explained the bike’s importance by saying, “This bike is vital to Sam getting exercise. He is not able to walk unassisted now and even a walker is too difficult, so he mostly gets around in his medical stroller and sits a lot of the day. The bike gives him independence to get around and work his muscles and get some exercise.”

Ella’s mom, Sarah also told us, “As her Mother, it is heartbreaking to have to explain that there are certain limitations that Ella must endure for her own safety and due to her ability.

The positives that would come from Ella having an adaptive bike seem endless – building muscle strength, coordination and flexibility, improved balance, motor skills and body awareness. The list goes on! For our family, this bike is so important because Ella can finally feel what it is like to get out there and go, especially with her siblings! She just wants a chance to keep up with the other kids.”

Appalachia Intermediate Unit 8:

Additionally, we presented 11 adaptive bikes, 11 adaptive strollers, and 7 communication devices, as well as fit 2 more kids for bikes with AIU8!

Taylor is all smiles on her new bike!

For Taylor, age 7, a new adaptive bike means A LOT, and her mom, Ashlee explained why, “As Taylor gets older, she is realizing things she is unable to do that her younger siblings are learning and that her peers have mastered. It hurts her feelings and lowers her self-esteem. I would love for her to be able to enjoy something as simple as riding a bike with her friends or us as a family. Her independence is important to her and to her father and me. While we can hold her on a bike or trailer, she is aware that she ‘should’ be able to ride alone and wants to so badly, but her depth perception, lack of balance, inability to pedal and her weak legs make it impossible on any typical bike.”

It was also thrilling to see Riley, age 16 get his new communication device, as he previously received an adaptive bike from Variety… He sums up the day perfectly using his device.

Riley is showing off his new device.

A big shout out to our Intermediate Unit partners, who are a huge component to making our programs a success and getting this life-changing equipment to eligible kids in need – and we couldn’t be more grateful.

Rep. Dermody Joins LIFE-CHANGING TOUR!

Yesterday, we were honored to have Pennsylvania State Representative Frank Dermody join us for our presentation of 22 adaptive bikes, adaptive strollers, and communication devices at the Pittsburgh Mills Mall (hosted by Blackburn’s).

Above is Rep. Dermody and I getting strapped into our bikes to begin the parade!

In addition to Rep. Dermody joining us, we were also joined by representatives from the United Steelworkers – District 10, who raised more than $500,000 with USW International President Leo Gerard to sponsor more equipment for kids!

6-year old Elizabeth received her new PINK adaptive bike yesterday, and we were able to capture one very special moment between her and her mom, Tara – both filled with excitement!

Elizabeth and her mom couldn’t hold back their excitement!

During the presentation, Tara told us, “Elizabeth also got a communication device a few months ago, and we have waited 6 years to hear her voice. She told us through the device that her FAVORITE PERSON is her brother… and now with this bike, she’ll get to ride bikes with him.”

We had a TERRIFIC parade around the Mills Mall, which was led by Rep. Dermody on an adaptive bike himself. Watch the parade yourself by clicking here!

4-year old Joshua also received his new communication device, and his mom, Erin told us first-hand how much it means to her in this short video (click here to watch) – you don’t want to miss it!

Joshua is checking out his new device above.