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Smiles4Kids Foundation, 450 Boulevard du Cure Labelle, Laval, QC (2026)

04/07/2026

What is HPS?

Hermansky-Pudlak Syndrome (HPS) is a rare, multi-system disorder characterized by albinism, visual impairment, platelet dysfunction that results in easy bruising and prolonged bleeding, additional complications include inflammatory bowel disease, kidney disease, and the fatal lung disease: Pulmonary Fibrosis.
Currently there are no FDA approved treatments and HPS has no cure.

What is the “6-minute walk test”?

HPS 6-Minute Walk:

The 6-minute walk test assesses functional capacity in patients with diseases like HPS, which often involves pulmonary fibrosis.

The Test Method: Patients walk back and forth in a corridor (often 100 feet long) for 6 minutes, with rests allowed. It serves as a diagnostic tool, measuring how far someone can walk to evaluate their ability to oxygenate and to monitor for lung disease progression.

Significance: It helps determine if a patient with HPS is a candidate for or needs to remain listed for a lung transplant.

02/28/2026

Today is RARE DISEASE DAY and our daughter
☀️Eliana☀️ was diagnosed with a rare genetic disorder called Hermansky-Pudlak Syndrome (HPS).

HPS is characterized by albinism which has resulted in Eliana’s visual impairment, extreme light sensitivity, and very little pigmentation in her skin and eyes which puts her at a higher risk for skin cancer. It also causes Eliana to have a platelet dysfunction with a lot of bruising and prologned bleeding. Depending on the HPS gene, some people will also develop complications such as inflammatory bowel disease, kidney disease, and the dreaded pulmonary fibrosis. There is no cure.

Today we spread awareness so that one day, we can change this story. So that we can find the cure.

💛🫶🏼 Having a rare disease doesn’t stop Eliana from being a leader, going rock climbing, sliding down the slopes, enjoying the beach with UV protective clothing, grocery shopping with sunglasses on to cut the bright lights, running with the guidance of her white cane, or watching a hockey game with binoculars. She finds a way to do it her way. 🫶🏼💛

Nevertheless, we still have a sense of urgency to find a cure. Thank you to all who have supported us on this journey, and we thank you for spreading awareness. 🧡

11/26/2025

☀️💛 The success of our Smiles4Kids Foundation fundraiser is thanks to all of our donors, sponsors, and supporters and we are SO THANKFUL to each of you!

Together, we raised $30,000 for the and .fondation. Half of these funds will directly support the HPS Network as they work tirelessly, day after day, to try and get closer to HPS treatments and eventually a cure. 💛
The other half will be in support of Eliana’s low vision clinic, the MAB-Mackay Centre. Habilitas Foundation is the non-profit organization that raises funds to support this Centre and they will be allocating our donation toward an incredible new project for kiddos with visual impairments. Stay tuned for more details on this exciting project! We are honoured to contribute to something that will not only support Eliana, but will help countless visually impaired children for many years to come. 🥹🧡

We are so thankful we could give back to the two organizations that help us tremendously on our journey with Ellie’s Hermansky-Pudlak Syndrome (HPS). Thank you to everyone who has helped us and we are appreciative of every ounce of support! 🧡

THANK YOU to our incredibly generous sponsors:
Mongiat-Bernucci

uni-pièces
iasenza
AML International Transportsanctuaire.du.headspa

entertainment1

ca

p.international
ca sinks mtl

cafemtl
cathy a.k.barbershop
Janna Promotions

11/07/2025

WOW!!! 🧡🤗🎪
THANK YOU! THANK YOU! THANK YOU!!!!!

We are so incredibly moved by the generosity and kindness shown from local companies, family, friends, neighbours, and now new-found friends!

THANK YOU to everyone who came to our Smiles4Kids Foundation’s 2nd Annual Carnival Fun: Fundraiser Event on October 26, 2025! It was a HUGE success and we are so thankful to the over 200 guests who attended, the 25 volunteers who helped make the day run smoothly, and to all of those who sponsored, donated, spread the word, and showed so much support!
The success of our fundraiser is shared with all of you. We could not have done this without you.

THANK YOU for helping us spread awareness on the rare genetic disorder, Hermansky-Pudlak Syndrome (HPS) and visual impairments.

Together, we truly believe we could continue to have a huge impact on medical research, low vision services, and in-turn, help make more smiles 4 kids! 🥹💛

Thank you for supporting our mission and for being alongside us on this journey! Every dollar counts! If you missed your chance to donate, it’s not too late to help — the link is in our bio! 🧡

This incredible $30,000 will be donated to the and to the .fondation. Both organizations have helped us tremendously on our journey with our daughter, Eliana’s rare disease.

This is only the beginning and we are honoured to keep giving back, with the generous help from all of you.
🧡🤗

With incredible gratitude,
The Smiles4Kids Foundation Team 🧡

is proudly founded by 💚

hermanskypudlaksyndrome

10/06/2025

☀️ DAY 3: LOW VISION ADAPTIVE TOOLS ☀️

After learning to use her slant board, Ellie was introduced to a MAGNIFIER.

🔎 We had been using a magnifying glass at home but Ellie’s low vision team at the MAB-Mackay Centre suggested a magnifier that was EVEN BETTER — especially for toddler use! 🤩 This magnifier stays steady on a flat surface and can be easily moved across the page. It has a built-in light to slightly brighten the image or letters Ellie is trying to focus on, and it enlarges the area enough for her to see the image much better. We like to look at “I Spy” books with her magnifier and we use it when looking for small details in matching games. It’s also helpful when she is reading books that have a lot of colour or clutter or when Ellie wants to name the letters on the page if the font is too small.

Each visual aid tool makes such a big difference in Ellie’s day-to-day activities. We are always so eager to learn about all of the different options that could work for her!

Stay tuned for more low vision adaptive tools! 🧡
fondation

10/03/2025

🤩🧡 Representing our gear from !

With Eliana being the only person we know of in Canada who has the rare genetic disorder, Hermansky-Pudlak Syndrome (HPS), we sure think she dares to be rare!

🗒️ INFO:
Hermansky-Pudlak Syndrome (HPS) is a rare, multi-system disorder characterized by albinism, visual impairment, platelet dysfunction that results in prolonged bleeding, and additional complications include inflammatory bowel disease, kidney disease, and the fatal lung disease: Pulmonary Fibrosis. Currently there are no FDA approved treatments and HPS has no cure.

🧡

09/23/2025

☀️ DAY 1: LOW VISION — ADAPTIVE TOOLS ☀️

Since Eliana’s Albinism diagnosis, we’ve been adding more adaptive tools as she grows.

👶🏼 When she was a baby, we used high-contrast books, flashcards with large images, and toys that lit up to help stimulate her vision. 📚
Her food was served on plate colours that contrasted what she was eating so that she could easily find the food item. 🍽️
We named and described the objects she was looking at so that she could familiarize herself with the texture or smell of something, even if she couldn’t see it well.
When going outside, we brought a pop-up tent so that she could enjoy the outdoors without being directly in the sun since her eyes and skin are so sensitive to the light. ⛺️
We added dimmers and tinted our home windows and car windows to make it easier for Eliana to open her eyes in her environments. ☀️

As she got older, and with the help of the MAB-Mackay Centre, we learned about new adaptive tools that Eliana needed in order to keep progressing and reach her milestones. This summer, Eliana started exploring with binoculars a lot more. 🙌🏼

When she wants to look at a squirrel in our backyard or see a detail on TV, Eliana will take out her binoculars to help her better see those further objects. When Eliana took a boat ride this summer, she used her binoculars to see the views around her. Although the scenery was still blurry for her, seeing the contour of the bridge and Ferris wheel were still fun sites to see! 🫶🏼🎡🌉

Using her adaptive tools has been empowering and has helped her development a lot.

Stay tuned for more adaptive tools with low vision! 🤗🧡

❤️fondation 🩵

09/18/2025

☀️💛🤩

09/18/2025

🎟️🍿🎯☀️🧡 SMILES4KIDS FOUNDATION proudly presents its 2ND ANNUAL CARNIVAL FUN: FUNDRAISER EVENT on October 26, 2025! 🧡☀️🎯🍿🎟️

This event will be filled with great food, drinks, and lots of FUN FOR ALL AGES! 🥳

There will be tons of entertainment from classic carnival games and skee-ball to bouncy castles and mini bumper cars - everyone can enjoy this event for a great cause! In addition, there will be a photo booth, face painting, cotton candy, a popcorn station, and much more! A silent auction will be ongoing and you can buy raffle tickets on-site to participate in any of the carnival games and enjoy some treats. Each raffle ticket will enter you into our draw for tons of prizes throughout the event!

🤩 And the best part: all funds from every raffle ticket purchased will go directly to the SMILES4KIDS FOUNDATION fundraiser! The more you play, the more we raise! 🤩

________________________________________________

IF YOU’RE NEW TO OUR PAGE: WELCOME!! ☀️🤗

💛🧡 SMILES4KIDS FOUNDATION is a non-profit organization that raises funds to help those affected by the rare genetic disorder, Hermansky-Pudlak Syndrome (HPS), as well as those affected by albinism and other visual impairments. HPS affects multiple systems in the body and in addition to albinism and a visual impairment, HPS also causes a platelet dysfunction and can cause inflammatory bowel disease, kidney disease, and the dreaded pulmonary fibrosis — to date, there is no known cure and it can be fatal.

💛🧡 SMILES4KIDS FOUNDATION is working toward raising awareness for HPS, funding research and treatments, and then one day - finding a cure! Our collective fundraising will support the and .fondation, both of which are non-profit organizations that support those with HPS and other visual impairments.

Come join the fun on Sunday, October 26th and thank you in advance for your generosity!

With gratitude,
THE SMILES4KIDS FOUNDATION TEAM ☀️🤗💛

09/18/2025

“Eliana, you can do hard things.” 🌈

— Ellie’s new Pre-K teacher told her that on her 3rd day of progressive entry into school. On her day off, Ellie asked me to do a “mini-school activity” as we often like to do at home. Sand art was the activity! 🖼️
Sand art can be hard to do. There are tiny stickers to peel and a tiny scooper to pour sand onto tiny sections of sticky paper by specific colours. So many tiny things! And it can be tricky — even for a grown-up! 😉

But Ellie turned to me and said, “Mom, my teacher told me I can do hard things. So I can do this.” 🥹
And off she went.

We set up her CCTV screen that projects and magnifies whatever the lens is pointing at, we added her lamp for good surface lighting, and we rested her sand art sheet on her slant board. She may be legally blind and she may only be a 4-year old but none of that mattered because Ellie sat there - for 1 hour and 15 minutes - determined to get it done. 🤩

She took a few “breaks for her eyes” 👀 but kept telling me she wanted to do more.

Ellie is my greatest teacher. She shows me each and every day that she really CAN do hard things. She has no limits. She is unstoppable. 💛

And her smile full of pride with her finished result is just priceless. 🥲🧡
fondation 🩵

09/18/2025

☀️📚💛 This summer, Ellie had the privilege of completing a 5-session “Pre-Academic Program” at the MAB-Mackay Centre — her amazing low vision clinic in Montreal!
In preparation for Pre-K, Ellie got to participate in sessions with other cutie children who are visually impaired.
Together, Ellie’s team of specialists and therapists helped her line up like she would in school and use her cane at a safe distance before the next friend in front of her. 👩🏼‍🦯‍➡️She practiced opening and closing her backpack, hanging up her jacket and cane in her cubby, and getting seated in a beautifully simulated classroom with a SMART Board. And similarly to real school, the children then completed a range of activities from colouring, tracing, cutting, and glueing, to puzzles, games, and more! She used her visual aids like her slant board, her magnifier, and her lamp.
Ellie then learned the importance of taking “breaks for her eyes” when there was just too much stimulation happening or when her eyes got tired from all the “looking”. 👀
She got to practice her role in advocating her needs and asking for help. 📣 The Pre-Academic Program ended with a lovely award ceremony. 💝

These sessions were thanks to the amazing .fondation which funds these great initiatives!

Here at we keep our fundraising top of mind so that we can help keep programs like this going.
This way, ALL kiddos can feel ready for school! 🥰

🤩 The team of low vision specialists, therapists, and volunteers beside Ellie have helped guide her along for over 4 years now and we cannot be more thankful to their help and services!
Thank you to each and every one of you! 💛🧡💛

Smiles4Kids Foundation

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