We’re officially back for our 4th year and it’s going to be our best yet! Get a beautiful view of Huntington Bay while we eat, drink and hang. Check out our new merch >>> it’s so good. Plus, the Raffle Baskets are insane this year!
Maddie Takes The Field
Every year the Spring brings flowers AND baseball!
This season I had the opportunity of a lifetime, to take the field with the Mets thanks to the help of my dance studio Dancing Dreams.
The Mets starting Centerfielder is named Brandon Nimmo. Brandon is a great guy who started his own foundation called Nimmo’s 9.
The mission of Nimmo’s 9 is to offer support, empowerment and memorable experiences to local community members. Throughout the season, Brandon Nimmo will meet with individuals from diverse communities, such as elderly, youth in foster care, individuals with disabilities, military and first responders, and underserved youth. Each Nimmo’s 9 visit, Brandon meets with nine community members to take pictures, hand out Mets swag and learn about their individual stories like mine.
Brandon invited nine members of the Dancing Dreams crew and the President of Dancing Dreams chose me! Once I got the invite I knew exactly who to take — My Dad — because he is a HUGE baseball fan.
My Dancing Dreams team and I got a special stadium tour, taken on the field for batting practice and got to meet with Brandon who is a super guy (as well as a pretty good baseball player from what my dad tells me).
After the pregame festivities we got to watch the game with my crew and my Mom and Sister joined us as well. It was an incredible experience and I wish Brandon and the Mets the best of luck this season.
My Dancing Dreams
My twin sister Marlowe began taking dance classes starting at age 5 and since that moment I have dreamt of finding a dance class of my own. This year that dream finally came true!
My mother found a non-profit called Dancing Dreams, a studio deicated to helping youth of all ages and abilities take dance class in a safe, supportive, JUDGEMENT FREE environment. They are an incredible place and their reviews say it all.
The joy I feel and the pride I have when I get to tell people I take dance class is simply incredible.
In the Spring we had our big show at Queens College. I participated in three numbers and believe me when I tell you my moves and my smile stole the show. I performed the part of Dorothy in a Wizard of Oz number, was a 1960’s Flower Child and joined in during the show Finale with all my friends and fellow dancers.
Every single kid in the show had a 1:1 aid that was local student volunteering their time and while we were the stars of the show we couldn’t have done it without them.
I love Dancing Dreams and will be returning next year and can’t wait!
Back To The Slopes!
Last year I had the most amazing experience getting to ski for the first time and this year thanks to the help of another non-profit I got to hit the slopes once more.
It was at Windham Mountain about 4 hours from my home in Long Island. I was helped by the Adaptive Ski & Sports Foundation, whom I rode with last year.
What made the ride even better was that I got to ski with my sister Marlowe AND had the same instructor (himself the father of two daughters with one who is also an Adaptive Skier) as last year.
We also got to speak with the Adaptive Sports Foundation staff who thanked our foundation so much for the portable Go-To Seat we donated to them. The staff there said the Go-To Seat we donated to them has been so popular for kids who have difficulty holding their heads up, they were looking for a second.
We shared the story with the Madeline’s Movement Board and they approved sending them a second chair! We couldn’t be more excited as they are such a deserving organization and I want to share the feeling of skiing with other kids just like me.
Roller (Ice) Skating
This Winter my sister Marlowe started taking Ice Skating lessons and because we’re twins who like do do what the other does — I wanted to hit the ice as well.
We spoke with the team at the Clark Gillies Ice Arena in Dix Hills and they couldn’t have been happier to help me hit the rink. In fact, they cleared the rink and let me go all by myself with the help of a couple amazing instructors pushing and filming me.
I loved it and was just more proof that despite my CP I can DO and ENJOY all the things other kids do, even if I’m doing it my own way!
Madeline's Movement Lemon-Aid Stand 23
On Labor Day Weekend, we held our 3rd ANNUAL Lemon-Aid Stand — our biggest and best effort yet.
This year we expanded our footprint to serve more delicious treats and even more people. We wish you could be there to see Madeline at the stand - she loves working the register and ripping people’s raffle tickets.
This year we rolled out even more Raffle Baskets with our biggest prizes to date. From the Performing Arts Basket which included nearly $1K in Youth Music & Dance, to the Bite of Huntington Basket with nearly $500 in dining at Huntington’s top restaurants, The Bark Basket which included a full day of cleaning and pampering for your pooch and many many more.
We also debuted new merch designs and nearly tripled the sales from previous years
All in all, we raised thousands of dollars to give back to local children and families affected by Cerebral Palsy.
Returning to the Napa Center
I just returned from my second first trip to the Napa Center outside of Boston, and it was terrific.
Like my first trip, I participated in a three-week intensive therapy program, where I pushed myself, learned new things, and grew in entirely new ways.
Again, I used some new equipment. My favorite was a fantastic mini treadmill I walked on while being supported by my gait trainer.
The Napa Center continues to grow and open more locations worldwide, and I look forward to growing with them and their staff's help. We're putting our name on the Napa 2024 Lottery and hope we get selected. 🤞
A New Adventure
I'm excited to share my newest adventure, one where I tried a "new" type of "movement." During school break last week, my family visited Windham Mountain and I - skiing - for the first time. Wow, did I love it.
The lesson was offered by the Adaptive Sports Foundation, which has been working with special needs skiiers (even many who are visually impaired) since the 1980s. Their program is so popular we initially couldn't get a reservation (They were teaching kids from United Cerebral Palsy and the NYC Hospital of Special Surgeries). However, they called Friday morning due to a cancellation, and I was in!
I had so many firsts that day, from riding a chair lift to gliding on snow over a ski, all while having my twin sister and parents along for the ride.
I had a team of five instructors alongside me on the mountain. They surrounded me while one helped me steer. He was telling my parents, "It was all her! She was skiing, I was just helping her steer."
The staff was highly trained and try to customize the ski-seat to ensure the safest ride for every child. When they got the ski equipment ready for my lesson, my parents noticed they didn't have a chair with the head support that our own FireFly "Go-To chair" offered. We asked if we might add it to their ski equipment, and they happily strapped it into their own gear.
Following my day on the slopes, the instructors raved about the chair and said they had never seen one like it. They shared stories of children who struggled with head control and saw how having chairs like this in their program would improve the experience and safety of many riders.
We came away from the entire experience inspired and wanting to help. We sent a letter to our Madeline's Movement Board suggesting we donate a Firefly "Go-To chair" so that children like me could continue to experience skiing in safety and comfort.
The Board approved, and we sent the Go-To Chair to the Adaptive Sports Foundation. They received it and sent back a glowing thank you letter.
I can't wait to go back, hit the slopes again and see the chair in action.
My Friend Alma
Another really nice thing that came out of the Napa program was my Mom getting to connect with another family who could use the support of Madeline's Movement.
Chaya Thanhauser and her daughter Alma were in the same session as me, and Alma also has CP. Alma needed an adaptive bath chair to allow her parents to bathe her safely. I knew exactly what she was going through, as my parents had come to the same crossroads.
My family got a Firefly Splashy chair, which improved bath time for everyone. We wanted to share that feeling with Alma, so Alma's family filled out the Madeline's Movement Application for Aid, and our board happily approved it.
Alma is loving her bath time even more, and her parents are loving the safety of the Splashy chair.
That got me thinking: Maybe Alma could use more supportive equipment. We had a fantastic wheelchair that I had outgrown but was in excellent condition. Alma's family was excited about the chair, so the foundation donated the wheelchair to her as well.
Now we're all sitting pretty.
The Napa Center
At the end of September, my family and I headed to the Boston area to attend a month-long intensive physical therapy program. Mom and I lived in an apartment while my Dad and Marlowe commuted from Long Island every weekend.
The program is at an extraordinary place called the Napa Center. Napa offers individualized pediatric therapy programs with unique combinations of physical therapy, occupational therapy, speech, and speech/feeding therapy. They provide hope for families like mine by offering services in a playful environment that helps kids like me maximize our full developmental potential.
The center is teeming with patients of all kinds, and its staff of therapists has been excellent. I loved ALL my therapists but had a special connection with my PT, Geoffrey.
I tried trying new therapies, positionings, and devices like electro-stimulation. I feel stronger, more open/flexible with specific movements, and even gained a little weight! I was excited and proud of myself.
Even more exciting is that I was chosen in the lottery to return and will return in June of 2023!
🍋 The Lemon-Aid Stand '22 🍋
The Lemon-Aid Stand returned for year two and was another huge success. We celebrated Labor Day Weekend, serving up the favorites from last year with new tasty treats, bigger, more exciting raffle prizes, and exclusive merch.
Neighborhood kids once again volunteered their time to work the stand. Hundreds stopped by to support. Most importantly, we raised money to lift up the local CP Community.
🍋 Lemon-Aid Stand: The Refill 🍋
We followed up our first Madeline's Movement Lemon-Aid Stand with a second event over Labor Day Weekend in Long Island's Bay Hills neighborhood, and it was a resounding success!
Our neighbors welcomed us as we posted up next to the local tennis tournament and welcomed hundreds of guests over three days.
Our handmade goods flew off the shelves, our raffle baskets provided by local business partners were a hit, and our lemonade jugs were empty by the end.
Most importantly, the community felt engaged. We had kids volunteering to work the stand throughout the weekend, and we received a handful of letters following the event saying how much they appreciated the new addition to the holiday weekend. We're looking forward to 2022 already!
🍋 The Inaugural Lemon-Aid Stand 🍋
So… I am beyond excited to mention that for Summer 2021 we’re organizing the Madeline’s Movement Lemon-Aid Stand!
It’s A Traveling Fundraiser Kicking Off:
SUNDAY | August 1st | 10am-3pm
@9 Brush Pl. Huntington, NY 11743
Hosted by friends of the foundation, we’ll have something for everybody with drinks, handmade baked goods, and sweets, as well as a fun environment to sit and connect.
50% of the proceeds from each Lemon-Aid stand will go to a local child with CP and 50% will help Madeline's Movement continue to provide aid.
Can't make it but want to support? Donate HERE and we'll send some cool, refreshing vibes your way as our thanks to you 🙏
We’d be delighted if you could stop by — can’t wait to see you all!
Madeline & Her Board
Holiday 20: Ornaments
2020 has had us all looking at the world a little differently, so for our Fourth Annual Holiday Ornament Drive, the inspiration was seeing things differently. My Mom (with help from Dad) helped craft an ornament you could actually see through featured a 360 view of the logo. We also added a little decorative snowflake to nod to the season, and I think they look really really beautiful. Go Mom (and Dad)!
I'm Coming Out: New Gait Trainer!
This is me working hard. Why, because thanks to the help of our insurance company, I finally got my very own Gait Trainer! I was one of my favorite pieces of equipment at school and now I can use it to walk all over my own house. It has an adjustable height seat support to help me stand and support me if my legs get a little weak. It also has armrests and padded trunk support. Most importantly though, it’s got a great set of wheels that I can push around and feel independent.
Staying In and Standing Up
Due to the pandemic we’ve been spending a lot of time at home, but thanks to a little help, we got an Upsee. It allows me to stand with the help of someone else. It’s fun, great for building bone density and Mom and I just look so cute.
BEST. PRESENT. EVER. : 🚴♀️
In 2019, my mother submitted an application to another foundation here on Long Island that helps get adaptive bikes for kids like myself and I was lucky enough to be granted one. I am overjoyed, I love riding it and getting pushed by sissy. What's even more, is the more I ride it the healthier and stronger I get.
Holiday 19: Ornaments
For our Third Annual Holiday Ornament, the inspiration was glitter and paper crafts. My Mom helped gather all the materials including shredded glitter paper and I got to help turn it into an artistic potpourri. We printed our logo on the outside in a festive red and then filled it with paper and sequins. I think they came out beautiful.
Hitting the Road: Running (& Rolling) on 5Ks with Dad
This year I got to join my Dad on my first two 5Ks. I love feeling the air on my face and watching all the other runners around. I take my physical therapy seriously and one day I want to run one myself.
Saddling Up: Summer Hippotherapy Horse Camp
My father works at a pretty great company that has a grant program and back in 2018 he submitted an application to send himself or a family member away. They loved our story and he was lucky enough to win a grant. The grant helped me to get away to Islandia (which is actually in LI!) to try Hippotherapy. It’s therapy on top of a horse because a horse is the only animal whose gate mimics that of a human, which helps stabilize my spine and open up my hips. I also practice speech therapy on it which is pretty cool. I have been riding my horse Ella since 2018 and this Summer I went to a weeklong Horse Camp at the Pal-O-Mine facility. We didn’t just ride either, we got to play games with other campers, do arts&crafts and even go swimming every day.