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.

Opening Up: "SPML" Surgery

This week I went in for my first surgery. It was a non-invasive Selective Percutaneous Myofascial Lengthening or “SPML” surgery for my hip adductors, hamstrings, gastrocs, biceps, and common flexors. I was also given alcohol blocks to the obturator nerve branches and biceps. These procedures will help prevent injuries by reducing the tension that could cause dislocations in my joints, especially my hips. Over time these procedures will help me attain a more normal body position as well as be more in control of my muscles and allow me to get the most out of my physical therapy. 

The surgery was in NJ and just took a few hours. I came out of it just fine and went home that day and now I have this fancy brace that I wear to helps stabilize my hip and trunk and keep my bones and joints growing in properly. I'm very excited.

Giving Back: Helping local LI Kids with CP

The Foundation has done a lot of giving recently and we wanted to share an update and some pics. We held a Giving Event at my school, where ordered custom equipment and donated money to the purchase of a wheelchair-accessible van.

The first piece of equipment was a chair for a little girl named Lila at my school. She is a very smiley and super positive little girl. We met her parents at the school’s Holiday event. They came to our booth to learn about the Foundation, bought an ornament, and then applied for aid a few weeks later. This chair is going to help in a big way at home when it comes to feeding, therapy, and playing with her older sister. 

We also met the Mother of the boy at my school. She applied for money towards a special-needs van she needs for her adopted son Brian. Brian is a happy, determined (and sharp-dressed) young man with a great smile. She actually had already purchased a special needs van one, but it was totaled in an accident and the other driver had no insurance, so we are really excited to be able to do this to help Brian get out more. 

A second chair for a girl I know named Gabriella came in and we were able to give it to her parents for her.

Overall, it was a wonderful day. Members of the school from the principal to the social workers, teachers, and aids all came out and the families couldn't stop thanking us. It felt wonderful to give back because I know how much it means.

Holiday 18: Ornaments

This year for our second annual ornament drive I had a lot of fun crafting together with Marlowe and my parents. The inspiration was a Christmas Tree so we filled our glass balls with little sprigs of pine covered in snow and I think they came out pretty great.

Back To Canada: My Latest Trip To Health In Motion

I just completed a 5 week physical therapy session up here in Toronto and want to report that I did really well. This was my 5th trip up here and I can’t thank my family and my therapists enough. It was a great program, I put in a lot of work, and I’m taking it all home to keep building on this momentum.

You can watch me doing therapy HERE and learn more about the Health In Motion Life Program HERE

Roll For Love Recap

WE ROLLED HARD
The Roll-A-Thon was a success. It was a lot of work, but it was also fun and unique. The team built on the format off the backs of our Board members and Friends of the Foundation. We got corporate sponsors involved for the first time, SMASHED OUR FUNDRAISING GOALS and when it all was all said and done we learned so much. We’re excited and already looking forward to doing it again next year.

Roll For Love

ROLL BACK IN TIME, WHILE HELPING PEOPLE WITH CP MOVE FORWARD

Remember the fun of skeeball as a kid? Now's you're chance to come out and play some games for good.

Purchase a ticket below and join us on Saturday August 25th:

+ Each ticket gets you unlimited skeeball
+ $1 of EVERY drink purchased will go to Madeline's Movement
+ We’ve set “Roll Goals” and when the group hits new levels, you help us unlock — BONUS CORPORATE DONATIONS!

PLUS, we have a ROLL FOR LOVE RAFFLE with a variety of prizes from restaurant gift certificates and gift bags, to NYC experiences and more!

Can’t make the event? You can still make a difference by donating. No contribution is too small. You can give right on our website.

ALL event tickets, raffle tickets and donations are 100% Tax Deductible!

Please join us and help make a difference for families affected by CP.

Thank you from Madeline and all of us at Madeline’s Movement. Can’t wait to see you there.

Madeline’s Movement is an IRS-approved 501c3 Non-Profit Organization | MadelinesMovement.org