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“Be Their Guest” Disney Trip Perspectives from Several Autism Parents

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It’s one of those things that is a dream for every parent–a check mark that most of us feel like we need to have at some point–that Trip to Disney with your child. A few years ago, we almost reluctantly made our own trip with our then 11 year old son mostly because 1) we stopped thinking that somehow it was going to eventually get easier as he got older and 2) we were already planning to be in Florida for the wedding of a dear friend who asked that our son be there since she used to work with him.

So, we mustered our strength and did the trip with accommodations so that we could do that big check mark off our parent list.

One of the things we wished we had realized sooner rather than later was that we should have gone when our son was younger. That his anxiety at being around that many people was really pronounced as he was getting closer to puberty and that perhaps a few trips in youth might have really made this the magical journey we were always told it would be.

Alas, we still made the best of it but in this blog post, I wanted to invite two other perspectives so that if you too have been thinking of making that magical journey with your family you know what to do and can make the best of it.

Like us, one of these families was originally waiting for “the right time” to go and we discussed it and I’m glad they finally did go and had the time of their lives.


First Time To Disney: A Short and Sweet Tale of Making the Dream Come True

The Sneed Family 

Going to Disneyworld was a first for my entire family. Prior to the trip, my husband and I thought it would be extremely difficult to take our son Quacey. As with any kiddo on the Spectrum, change is impossible so we needed to be well organized.

For many reasons, we decided to opt out of taking an airplane and thought it would be best to make it an Ol’ Family Roadtrip from Lancaster to Orlando!


Once we arrived inside the park, we immediately headed over to Guest Relations. They were extremely helpful and familiar in servicing children with Autism. That made me so comfortable!

At that point, we were given a complimentary double stroller & Disability Pass that allowed Quacey (and family) to cut down on the wait times of rides as well as experience the “Magic” without the fear of the long lines, crowds, etc. If your child experiences sensory related issues like my son, the quiet zone would be a plus. We were able to wait in a much quieter area until we were ready to ride. With all these wonderful amenities, Disneyworld makes everyone feel EQUAL. With the support of The Tommy Foundation, Quacey could see Mickey at the age of 7. Because of our TTF family, my family and I got to enjoy this magical experience at Disney, together!

Thank you TTF for Everything! – The Sneed Family


A Longer Tale From A Disney Family Expert 

The Magee Family

We traveled to Disney for the first time in January 2011 to celebrate my birthday. Our son Liam was only 18 months at the time and had not been diagnosed yet with Autism. He was at the time and still is non-verbal.

Our trip to Florida was just to get away from the PA winter. We were trying to travel to Miami or Ft. Lauderdale and found that Orlando had more family friendly resorts. We never thought our first trip to Disney would turn us into Disney Fanatics.

The first thing to do when planning a Disney vacation is figuring out the best time of year to go. You can google “When is it the best time to go to Disney World” and you will find calendars that list every day of the year and the crowd sizes. This will help greatly, when you plan your trip. It is very hot and humid in the summer time starting in June, so be aware of that fact too. Since that original trip we have been to Disney six more time and just did a day trip to Disneyland while we were visiting our oldest son in California last month.

It has turned to our go-to family vacation. We have gone as a family of three all the way up to a family of six, which included our older children and Grandparents. We have always rented a car and stayed off the Disney property at an area timeshare or condo unit. There are tons of these properties that are only a few miles from the various Disney parks. We have rented via Southwest Airlines Vacation, Costco Travel and Air BnB. There are two reason why we do this: one is that it is much cheaper than staying on Disney property and the other is the large amount of living space that we love to have on vacation. These resorts have big pools, restaurants, and children activities just like at Disney Resorts.

We like having multiple bedrooms, bathrooms, and kitchen areas. We like Liam having his own bed/bedroom to sleep in so that he can go to sleep at a decent time. Then us parents can stay up late and not disturb him. Having a condo also allows for more space for Liam to play in, when we are not spending time at the Parks. We always pack his trains, balls, and other beloved toys, so he can play during down times. Liam is very particular about what he eats. Having a fully function kitchen allow us to have all of the foods that Liam likes to eat. It also saves money for eating all of your meals out. We always pack a lunch, drinks and snacks for Liam to take with us into the park.

It just makes it easier to know that he is content with all of his favorite foods. Disney allows you to bring drinks and foods into the parks. They check all bags, but we have never had any problems at all. We also pack frozen bottles of waters during hot months. I just hate paying $3.00 or $4.00 for a bottle of water, when you can by a case for a few dollars more. Snacks also help with waiting in lines for shows and to go on rides.

Disney offers a Disability Pass to help you get on rides faster. If you are familiar with the Disney Fast Pass system, it is like having an additional Fast Pass. You can pick one of these passes up at any Guest Services Desk at any Disney Park. It allows to either to enter the Fast Pass line and wait a few minutes or sometimes it allows you to go and get on at the end of the ride. It just depends on the ride. We always use it for the most popular rides, because sometimes the normal Fast Pass for those rides will be booked. This is the first thing that we do, when we arrive at the Parks. It only takes a few minutes. I just let them know that Liam has Autism and then they take his picture and set him up with the pass. You do not need any written documentation about your child’s condition. The pass lasts for the length of your stay. When you use this disability pass the child must be on the ride with you. It also allows up to six people to go on the ride including the person with the disability pass.

There is a Disney World App that you can add to your phone. We use that a lot to look at wait times for rides, shows, and character meet and greets. It also helps to keep track of your Fast Pass times. It is a great tool to use.

On a side note, both Dutch Wonderland and Hershey Park have disability passes. Just ask about getting them as soon as you enter the park. It also never hurts to tell a Cast Member, another name for a Disney employee, that your child has Autism and the special pass. They will sometimes let you get right on a ride or do a meet and great and not wait in a big line. It seems like it is up to the personality of a Cast Member.

When we were at Disney at Christmas time in 2015, the Cast Member could tell I was having some issues with Liam as we were waiting in line to get our picture taken with Santa Claus. She let us walk right in front of everyone in line and we were the next family to get our picture taken. She explained to Santa our situation and Santa spent so much time with Liam, even though Liam doesn’t talk. It was a great experience and I will always remember what that Cast Member did for us. We probably have 20 pictures of Liam with Santa. Just “talking” to him, Liam touching his beard, and just hanging with him. It was truly a magical experience.

I was concerned about taking Liam to the Parks on our first visit, because in my mind you never know when he may have a bad moment or day. The way we deal with this is working around his schedule. If we know we have had a couple of busy days in a row, then I make sure that we have a pool day to break it up. If we know that we are going to stay late in the Park for a parade or fireworks, then we will get to the Park later in the day and enjoy the pool in the morning. Planning out your day in advance is a lifesaver.

If we know Liam needs a break and needs to just relax, then we stop and don’t push him. This may be sometime on the IPad or we usually buy an ice cream snack and that always puts him in a great mood. I think you have to let your child be your guide.

Liam is full of energy, we are usually the ones that get tired before him ☺. As I have said earlier, our older children and Grandparents have all traveled with us to Disney World. When Liam’s older siblings, who are now 22 and 19, have traveled with us, we always make sure everyone got on the rides that they really loved. So if that meant splitting up in order to do so, then we would do that. I don’t like roller-coaster or scary rides, so I would go on the smaller rides with Liam and my husband would do the more adventurous rides with our older children.

If your children are older and can be on their own, then we would let them go and give them a time to meet back with us. You can always keep in constant contact on your cell phones. When we have just Liam with us, then it is all about him and the rides and shows that he loves to do. We have done some of the various restaurants that Disney has to offer. We only go to places that we think Liam will eat from the children’s menu, since he can be picky about his food.

We love the Winnie the Pooh Breakfast Character Meal at the Crystal Palace in Magic Kingdom. Liam really loves the Pooh characters. So we try to make sure we visit them, since he actually recognizes them. When Liam saw Pooh and Tigger on our last trip, we actually waited in line for about 40 minutes at a normal meet and greet. We were there during the Thanksgiving time period so the Parks are much more crowded. Liam hung on with his snacks and playing some games with us as we waited in line. When it was his time to go up, I always like the photographer and the characters know that Liam has Autism and it may take him a little bit of time for him to look at the camera and warm up. Pooh and Tigger were so great with him and spent a nice amount of time with him. He was jumping up and down just like Tigger with a huge small on his face. I swear it was the best pictures we ever had of him and we didn’t have to even work hard to get them. Liam was simply in heaven.



If your child loves any particular Disney character, then those would be the ones that I would make sure I visit. These lines can be long, so don’t waste your time if your child may not be into certain characters.

From when we started to take Liam to Disney at 18 months to now, he definitely recognizes the Parks as soon as we arrive. He just starts jumping up and down and wants to run right in. Liam will be 8 in May and is quite tall for his age, so he can get on most rides now.

During our last two trips, we have taken him on more “non-kid rides” and he has done great on them. His adventurous side opens up so many more opportunities for us to go on more rides. We have discovered that he loves 3D rides and shows and wearing the special glasses. Liam loves the fireworks shows, but the noise still bothers him. So now we bring headphones for him to help with the loud noises.

As I said, let your child be the guide for your Disney Vacation. Disney World has turned into a true blessing for our family. It has become very familiar for Liam and we know he recognizes the Parks as soon as we enter. It is our home away from home.

Even though he cannot talk, I know Liam would say “I Love Disney”!!!!



Aren’t You the lady that came here dressed as…

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“Lighten up, just enjoy life, smile more, laugh more, and don’t get so worked up about things.” – Kenneth Branagh

Okay so that last bit is hard, I’ll admit. I get worked up quite a bit because well that’s my temperament and life in general especially when you have loved ones you care for with more challenging needs.

That being said, I definitely full on embrace the idea of lightening up, enjoying life, and smiling and laughing more.

So funny story that totally put my life into perspective and just how I’ve “coped” with being surrounded by constant stress.

I go to my local supermarket one day, just buying a bunch of stuff for yet another event I have with kiddos and their families for The Tommy Foundation, and all of a sudden I notice that my cashier can’t stop staring at me.

Me: “Is something wrong?”

Cashier 1: “Um, sorry I was just… um, aren’t you the lady that came in here once dressed as Hermoine from Harry Potter?”

Before I can answer…

Bagger: “No, no, she came in here dressed as Katniss”

Cashier 2 (next aisle over): “No, she was a minion!”

Me: “Okay, I’m going to save you all some time—they were ALL me.”

Confusion and stifled laughter…

Me: “I work with kids and adults that honestly can use a little joy in their life, so I feel that the more free and ridiculous I allow myself to be, the more freedom I give people to let go and not take things so seriously and maybe even embrace some childlike part of themselves.”


My words could very well have gone over the heads of the 3 “kids” helping me that day with my groceries. The oldest couldn’t have been over 20 and the concept of an older woman dressing up all the time and GASP! Not caring enough about what other’s thought of her probably left them reeling.

So why do I dress up?

Good question. In looking back at the 11 years since I’ve founded the non-profit I spend so much blood, sweat and tears on, I can recall times when I was more “professional” and blended in just a wee bit more to the community that has now been my home for over 20 years. It IS Amish country after all, I could do a better job blending in, I suppose.

Well first off, I like it. Yes, I’ll be honest, there is still a huge part of me that wants to play pretend and have fun and truly feels alive when I read books and watch films and then can somehow bring them to life. I wanted to be an actress in a former life, so there’s that too.

Two, it genuinely puts a smile on the faces of kids I work with to see me not only excited to see them and welcoming, but also being completely up to making an utter fool of myself for their amusement.

Three, it’s okay to take something that upsets you or that confuses you or that isn’t always happy and make the best of it.

There are days I don’t want to work.

There are days I don’t want to be “on”.

There are days I just want to stay in, cry and heck maybe even drink wine.

There are plenty of statistics and stories and even support pages and groups and social media updates that would condone me doing any of the things I already listed.

Studies Show…

One research study in The Journal of Autism and Developmental Disorders noted that moms of kids with autism have PTSD that is so high that it is similar to that of soldiers in active combat!

Excerpt from the New York Times on the study, states that:

“Researchers from the University of Wisconsin at Madison followed a group of mothers and their autistic children (adolescents and adults) for eight days. They were interviewed at the end of each day, and saliva samples were taken every four days.”

Among the findings:

  • The levels of chronic stress experienced by the mothers were similar to those of combat soldiers. The greater the child’s behavior problems, the worse the mothers’ stress.
  • Mothers of those with autism reportedly spend at least two hours more each day caring for those children than a comparative group of mothers whose children were not autistic.
  • The mothers of the autistic children were interrupted at work an average of once every four days. For the other mothers, the frequency was fewer than one interruption every 10 days.
  • The autism mothers were three times as likely to report a stressful event on any given day, and twice as likely to be tired.

There is probably at least a study a day that comes out with some reason why 1) we are to blame in some way for why our loved one has autism or 2) we should totally be miserable.

What’s the point lady?

The point I am trying to make is that life is too short to waste finding reasons to stay miserable.

I get it! I’ve read the studies.

I get it! I’ve been to the meetings and conferences and so on… our lives are crazy and some days we don’t want to adult. It’s hard.


You don’t have to dress up and act silly but find whatever version of your passion it is you have inside you—whatever part of self-expression you’ve lost throughout your years and bring it back into your work, your life and your children.

 Don’t Let Anyone Dull Your Sparkle!


Fall Dad’s Day a Success (except for our scores)

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The Fall 2016 Dad’s Day at High Sportz was pretty amazing, I have to say!

We started off with a great BBQ courtesy of Dave, caught up on opening day in the NFL, the new school year for our kids, and then proceeded to hit the racing track. Minus one stalled car for Everett, we raced it pretty well. Then we hit the mini-golf course, and let’s just say you can tell we don’t get out much anymore. Congrats to Everett for the win however, and Jacobo for a close second.

We closed out the night with some time at the batting cages. High Sportz was nice enough to stay open a little later for us, and we appreciate it.

Dad’s Day is a time for Dad’s to get out, make some new friends or see old ones, and take part in some friendly competition. Very friendly. So friendly in fact, that no one got run over this time in their race car. Which means we’re making progress.

Thanks again to all the Dad’s and Granddad’s that came out. We’ll be doing it again soon, and if anyone wants to help put it together, contact Rich or Sugey. See you in the winter!


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Join Us To Rediscover The “Forgotten”

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“Bring in the poor, the crippled, the blind, the lame…and compel them to come in so that my house will be full.” ~ Luke 14.

The quote above is one that the organization Joni and Friends of Eastern Pennsylvania wants to help our community observe while interacting with their new exhibit entitled “Finding The Forgotten”. This exhibit offers the viewer a glimpse into the world of different kinds of disabilities–including Autism–through a 30 minute multi-sensory experience.

I had the opportunity to experience this exhibit before its grand-opening to the public and was so impressed and touched by what I experienced that I instantly set up a time so that families and community members we serve can join me in experiencing it together. The opportunity to get this glimpse into the world of various disabilities via stories from individuals themselves and their families and guided meditation will benefit anyone that wants to get a deeper understanding and appreciation of the world of the differently abled and their families and reflect on ways that we can work together and to form a deeper connection with one another.

If you are interested in attending our Tommy Foundation day together at the exhibit, which is Saturday, Oct. 15th from 10am-1pm, please sign up via this link:

Finding The Forgotten Sign-Up

We are allowed to have a maximum of 30 people going through the exhibit at a time and it takes approximately 30 minutes to go through the exhibit. At this point I am collecting the names of those interested in attending first and we can assign specific times later if we have a lot of interest.

You can see more about the exhibit at

Infinitely Awesome Sponsors Three Years In A Row To Get Special Recognition

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“We Rise By Lifting Others” ~ Robert Ingresol

New Story (Salisbury Behavioral Health), PerformCare and Murry Communities will be recognized at this year’s Edge of Autism Walk & Festival, to be held at Buchanan Park on April 25th, 2015, for their outstanding contributions to the community over the last three years having donated at the “Infinitely Awesome” level or above during that time. It takes a lot to build programs and to have the capitol to make those programs run and flourish so it is extremely humbling to have three groups that so believe in the work you do that they support your efforts at the top levels for three years or more in a row.

New Story  Since New Story’s inception in 1997, their team of highly-skilled educators and therapists has been working with children and their families to provide personalized education and support to help them overcome challenges and achieve success. Each staff member and student has the opportunity to create individual new stories. Collectively, they create a much larger “New Story.” With many schools and service programs throughout Pennsylvania, they are continuing to expand offerings and locations to meet the growing needs of children and their families.

PerformCare-LogoPerformCare was founded in 1994 by a group of leading behavioral health organizations, including providers and related associations. They are a full-service managed behavioral health care organization that supports members and providers and offer specialized behavioral health and human services programs in both the public and private sectors. Originally known as the Community Behavioral HealthCare Network of Pennsylvania (CBHNP), PerformCare became a member of the AmeriHealth Caritas family of companies in 2008. Together with AmeriHealth Caritas, they are proud to be leaders in Medicaid managed care and behavioral health care. Today, they remain committed to a “mission-driven philosophy of care – providing quality, reliable, and cost-effective behavioral health management services to members across the Commonwealth.”

Murry Living WorkingspacesFinally, Murry Communities is one that on paper looks like there is less of an immediate connection to the ‘autism cause’ as their would be for the other two leaders herein presented given that Murry Communities largely deals with comprehensive real estate property management services. However, the real reason for the collaboration of this wonderful organization with the community comes in the form of a giving and generous spirit behind the scenes, Susan Murry, who as a mother herself who at times has had a difficult road understands the needs of our families and just wants to help anyway that she can.

We are so excited to share these wonderful groups and individuals with you and can’t wait to have them say a few words and receive the recognition they so rightly deserve at our ‘family reunion’ (The Edge of Autism Walk & Festival) this April.

Don’t forget that to register for the Walk, create a team or donate to a team that already exists you can visit

Fulton Theatre Sensory Friendly Program – The Nutcracker

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Sensory Friendly symbol is now used for identifying a sensory friendly production.

Sensory Friendly symbol is now used for identifying a sensory friendly production.

Many families in Lancaster got a chance to enjoy a sensory friendly production of the holiday favorite “The Nutcracker” on Saturday, January 3rd, 2015. For many of them, this experience was the first time their loved one was able to attend a theater performance. Many of the children there had autism and/or other conditions where sights, sounds, and other sensory stimuli might otherwise prohibit the individual from attending a theater performance ordinarily.

The Tommy Foundation President, Sugey Cruz-Everts, recently accepted a post on the Fulton Theatre’s Advisory Committee for at least the next 2 years. With this new role she hopes to be able to highlight the needs of individuals in the community that have sensory challenges and help them enjoy more of these kinds of productions with the eventual hope that they will develop a love of theater and the performing arts. TTF is excited to offer their support to the Fulton and the Committee’s founder, Jennifer Ridgeway, in this manner and looks forward to future productions.

Families that participated in this event received a social story about attending the theater; were able to request specific seating that made their experience better; could come an hour before the performance and feel some of the props, get to meet some of the actors, do crafts and activities that were supplied by Schreiber Pediatrics Rehabilitation Center and much more.  Children also received ‘fidgets’ (small toys that they could use in case they had anxiety to shake or play with) and were able to use the sensory room that was set up at the Fulton at any time that it might be necessary if they were overwhelmed.

For more information about future productions please contact the Fulton or contact us.

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Dad’s Day a Crashing (uh – Smashing) Success

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Some of the autism dad’s and families for the Tommy Foundation got together on Sunday, December 21st at Slick Willies in Wyomissing to mourn the loss of the Eagle’s season as well as race some go-karts. A few car crashes, spin outs, and drifting back-ends later, the undisputed racing champs were crowned – a tie for Randy and Dave after 3 long races!

Afterwards we had some good eating at the Works watching the Steelers earn their playoff berth and catching up with each other. Lots of great memories, bragging rights, and a few (small) competitive bruises for this one. Note: Brake BEFORE turns… really, it helps.

Looking forward to next time for sure! Tactical laser warfare anyone?

Tommy Foundation Receives Grant at AMBUCS Charity Event

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The Lancaster American Business Club hosted its annual fundraiser at Garth Gallery in Columbia, PA. The Tommy Foundation was excited to be counted alongside four other amazing non-profit charities selected by the Lancaster AMBUCS Chapter to receive monetary awards for their work in the community – SALSA Baseball of Lancaster, Schreiber Pediatric, Meal on Wheels of Lancaster, Tommy Foundation & PowerPacks Project. It was an amazing night had by all, and over 100 people were in attendance!— at the Garth Gallery & Custom Frame Shop.

Tommy Foundation Helps Fulton Opera House With Sensory Friendly Performance

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On Monday, October 27th, 2014, The Tommy Foundation was honored to participate in The Ware Center at Millersville University Lancaster’s performance of “The Snail and The Whale” a Sensory Friendly production. TTF President, Sugey Cruz-Everts met with Barry Kornhauser ahead of the performance to discuss the needs of those with sensory needs—the need for a quiet area, a gross motor area and an area for other activities that would help with setting the children at ease before the performance.

The folks at Tall Stories, a British theater company known for its unique brand of physical storytelling performed this adaptation of Julia Donaldson’s children’s book “The Snail and the Whale,” a story about a tiny snail that wants to see the world and the whale that serves as her transportation.

For this performance, which can be enjoyed by all children, there were supports and resources for young patrons with sensory process disorders, Autism Spectrum Condition, other sensory needs, learning disabilities, and/or social, cognitive, and physical challenges. Our role the day-of was to provide on hand support for families that needed a bit of prep time before the event. We brought sensory mats, games and activities to a specially designated area of the Ware Center that would be set up an hour before the event and during the event if children in attendance needed a sensory break in order to better enjoy the performance.

Prior to the performance date, a Study Guide AND a Social Story describing the theater experience was sent to patrons who also had the option of arranging a free tour of the Ware Center by contacting Barry at or phoning (717) 871-7812.

Thank You to Our 2014 Edge of Autism Sponsors!

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This year’s 2014 Edge of Autism event was a smashing success in no small part to all our wonderful donors out there! The Lancaster County community and those involved in autism around the country came together to help over 650 individuals and families affected by autism have a nearly perfect day! We thank each and every one of them, and hope you’ll join us in counting to support them in their businesses so we can continue to support each other as well.

Thank you!

$1000 or More – Infinitely Awesome Sponsor
(in alphabetical order)

Age of Autism

Clark and Associates

Lancaster Toyota Mazda Scion

Murry Family


Tobias Frogg


$500 or More – Acceptance Sponsor
(in alphabetical order)

Julie Abel



Lashonda Black

Family Behavioral Resource Services

Diane Hill

Life Changes Realty

Naomi Fredlund


MassMutual Eastern PA (Special Care Planning Team)

MassMutual Eastern PA (Special Care Planning Team)

* plus a number of donors that choose to remain anonymous


$250 or More – Action Sponsor

The Vista School

Therapy Resource Center

National Penn Bank

URS Corporation

JD Pazzo’s Pizza

Donna Frankfort

Lives in Balance Gym

Stauffers of Kissel Hill

Matthew McMahon

Leisa Nelson

Nicole Nikolaus

Patricia Sobaru

PNC Bank, Willowstreet


$100 or More – Awareness Sponsor

Emily and Len Pinder

The Schlamm Family

Refreshingly Clean

Waddell & Reed, Inc.

Spooky Nook Sports

Heather March-Engle and Family

Agape Care

Joe & Shannon Cicero

Dr. Ann Lee, Health for Life Clinic

The Evans Family

Chiropractic 1st

Irv & Danita Martin

Tonya Robinson

Sarah Hurley

Erin Watson

Karen Kerper

Kountry Kraft, Inc.

Mamata Patel

Energy Sherlock

Robert D. Johnson

Behavior Interventions, Inc.

Tangled Manes

Raymond Baldwin

Bill Broam

Chris Broam

Kathleen Byrne

Randy Crispino

Darrenkamp’s Market

Autism Cares Foundation

Weis Grocery Stores

Micheal Gruber

Mary Hershey

Giant Food Stores

Hursh Painting Co, Inc.

John Ibberson

HA Boyd. Inc.

Constance Johnson

Jill Joseph

Rod & Sue Keller

Renee Linney

Carol Lownes

Catherine Mangan

Joan McMahon

William McGrorty

Maria Meliton

Sarah Olsavsky

Dr. Larry Oxenberg

Red Robin, Hershey

Kate Root

Eileen M. Sapovchak

Ralph Scott

Amit Sinha

Robert Smith

Jacquelyn Smith

Lisa Smith

Barbara Stank

Louise Stewart

William Stockwell

Matthew Tyson

Harry Ulrich

Debbie Walmer

Kari Woler

Micah Wyatt