Here are 2 interviews that CHF was honoured to do...
was gracious enough to host me on the show this morning. It was a really fun 6-7 min interview where we talk about : Misconceptions about Down syndrome Adaptive Athlete Program at All Level
Why it's important to EDUCATE on WDSDHave a listen while you're driving, cleaning, ignoring your other priorities HA! As always, grateful for the opportunity to use my voice.
For more resources and information to share with your groups please visit the "Resources" tab on the CHF website by clicking here.
Also be sure to enter the WDSD giveaway for a chance to win $100 for your workplace/family/classroom/gym/etc. Details are on FaceBook click here and Instagram click here.
We are beyond grateful to have been announced the NFL Canada's FAN OF THE YEAR!!! We are completely humbled by the nomination and feel extremely blessed to have been chosen by a panel of judges to be the FIRST PLACE prize winners, receiving a prize of $30,000!!!! Honestly, we are so happy to serve in our community that this was the last thing we ever expected or dreamed of. We are just happy to be active community members helping us all to grow together as a more inclusive place for all people.
Waaaaaaaay back in February I got a message from my friend Jen saying she was going to nominate CHF for an award - which she had done in the past so I really thought nothing of it (other than grateful for her in thinking to nominate us for anything). She never said what the award was and I didn't think to even ask!!
A few months went by and I had completely forgotten about it. Until one day a couple weeks back, I got a text from Jen asking if I would meet up with her to give her some info on CHF. I remember thinking to myself, "strange that she wants to do a face-to-face right now?"
We arranged a meeting a week later. She says NOTHING!!! Small talk until she excuses herself for a minute and I can hear her on the phone. I still think nothing of it. She comes back in and hands me the phone. Tells me someone wants to speak to me...Whomp whomp - I literally am so confused I am not processing information at this point. I grab the phone and it's Nate Burleson.
NATE BURLESON!!!!!!
Former wide-receiver for the Detroit Lions and current co-host of Good Morning Football and Extra. I was so thrown off guard, and to be honest I did not know who he was. I definitely knew he was someone but I couldn't place him. I thought football but I wasn't sure. Of course Matt knew exactly who he was and is a HUGE fan!!! As I come to find out, most people are huge fans of Nate. He is a super cool guy that is very active in community work and loves giving back.
So here's me, on the Zoom with Nate Burleson, sweating A LOT and he says to me Jen's nominated me for NFL Canada's Fan of the Year contest. He wants to hear more about the charity so that the panel can make their final decision. SO I AM PUMPED to get to tell him about the charity and what we do at CHF. I felt like I won already!
There are no amount of words I could type to accurately reflect the emotions I was feeling in that moment. First, I though it was a joke and then it settled in and I was in shock. Over the next few days, before the news broke, I just felt grateful. Matt and I have a great life. We are so happy to serve in our community. We love our Down syndrome families and ALL our community partners. We have deep passion for stepping out into the community and helping to create inclusive spaces. We are honoured to do this work everyday.
I think it goes without saying the gratitude we have for my friend Jen is the maximum amount. The fact that she thought to nominate us for this award that she saw pop up in her Facebook page is incredible!
It’s not everyday NATE BURLESON Facetimes you at work to tell you you’re NFL CANADA’S FAN OF THE YEAR. A contest that shines a light on extraordinary fans who have been a rallying force of their family, friends and/or community that inspire others through their love of football.
The conversation was just a blur for Windsor’s Stephanie Seguin.
Friend Jen Pillon told Seguin she had someone on the phone that wanted to talk about the Chasing Hazel Foundation. Pillon said it was Nate Burleson, but Seguin said she sort of went blank hearing the name of the 11-year NFL veteran and current co-host of Good Morning Football on the NFL Network.
World Down Syndrome Day - A day to celebrate the contributions made by those with Down syndrome that are in our lives, and communities. WDSD is on March 21st or - 3.21 - to signify the 3rd copy of the 21st chromosome that people with Down syndrome have.
Many of you celebrated in your homes this year by wearing your CHF socks (or any mismatched socks), took pics and shared on your social media. Some of you made donations to charities that are near and dear to your heart. I know CHF received many donations on 3.21 and we are so very grateful. We are always so humbled by community support. I shared as many photos via our IG and Facebook page that I could. Thank you so much!!
As for our All Level CrossFit family, who are always ready to celebrate WDSD, we did a very special workout that was designed specifically with that extra chromosome in mind. We met up with as many members as the social distancing limit would allow to do this workout together. Hazel and Nola joined, along with many other on ZOOM. It was SO MUCH FUN to all work together.
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Think about a time where you felt you truly belonged. Think about your role in that space. Did you feel safe? Accepted? Respected? Were you able to contribute? Were you celebrated for exactly who you are in that moment and not the potential of what you might one day be. But just for you, Just as you are?
Inclusion has been a buzz word for at least a decade. But sometimes we don’t know how to do it properly. It’s not enough to allow someone who is different into a space and call it good. It’s also not about allowing someone into a space and trying to make them “be more like the group.” It’s about seeing everyone as equal contributors to the space, and seeing value in that contribution. Which requires most to take a deep dive into our implicit bias about their beliefs about those that are different than we are. How do we define success? What do we define as hard work? What are our expectations?
When people show up in the world with a different definition of what we believe does not make them ‘less than’ - it does not mean they are not worthy - it’s does not mean they need to ‘do what the group’ is doing. It means a shift in mindset, an examination of bias. It means we need to see US not them. There are not others. There is us and we. And this takes work. Are you willing to do the work?!
Every human has value. Every human brings strength. Every human brings vulnerability and weakness. Every human is worthy, even if that scares us a bit. We belong to each other. We are responsible for each other. We are in this together. Let lift each other up. Let’s create spaces where people belong JUST AS THEY ARE.
#inclusion #contribution #belonging #chfwdsd
Thank you Sarah Jane Doiron Grant & Lindsey Thompson from Children’s First for bringing this message to the community 😘
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It has been quite a year of social distancing, isolating, and virtual everything. Last year, for WDSD it was challenging to get out there in the community to celebrate. Schools, workplaces, gyms, stores, EVERYTHING was closed. We did the best we could via brand new virtual platforms to honour and educate those we know and love with Down syndrome. Nothing can stop us with social media at our fingertips!!
2021 is still a year of social distancing, and mask wearing HOWEVER, we are able to be in the community to some extent safely. Let's look at the opportunities we do have:
Please don't let these challenging times stop you from getting to celebrate and most important EDUCATE about Down syndrome to the best of our ability.
If you still need socks to rock here is a link to order TODAY!!! I can still get them to you by Friday if that is when your school is celebrating.
Here is the event happening at All Level CrossFit gym on WDSD for all to participate in virtually. If you are interested in attending email me here and I will get you the info.
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Seeing as we were all told to social distance for WDSD, we all had to celebrate from our homes. Thank goodness for social media and the ability to connect that way.
Thank you so much to those of you who rocked your socks and posted a pic tagging us and using the hashtag
I will share just a few pics here to show that community support means the world to us! We can't change the narrative and the negative stigma around Down syndrome or disability alone. WE NEED YOU! We need you to educate, share, support, and acknowledge the abilities of ALL people in our world.
Thank you even bigger to those of you who shared facts, listened to my story, or shared positive, truthful things about living with a disability on WDSD. The part where we educate is even more important than wearing the socks!!
We had originally intended to have an event at All Level CrossFit and celebrate WDSD with our fitness community, but the universe had other plans. All Level is the gym where our Adaptive Athletes participate in a fully inclusionary setting twice a week. Please email me for more information or if you want to some and check out one of the Adaptive Athlete Sessions!
John, the owner of the gym, wanted to do something special to honour WDSD and all of our athletes with Down syndrome on WDSD. He created a custom workout where all the numbers are significant to Down syndrome.
Here is the significance of the numbers: 8 is Hazel's age; 3 is the extra copy of the chromosome; 21 is the location of the extra chromosome; 47 is the amount of chromosomes a person with Down syndrome has (the rest of us have 46). AND everyone joined rocking their socks!!!
It was such a cool way to celebrate WDSD 2020! We can definitely say that was a first! Thank you so much to everyone who joined us in the class. Those of you who joined us virtually on Facebook for Instagram LIVE. To John for adapting and organizing this event in a new platform so quickly.
We didn't take a lot of pics on the day of but searching my camera roll and I found this. The girls must have decided it was selfie time. They had so much fun doing the workout with us from home!
About a week before WDSD, I was super lucky to be able to visit 3 kindergarten classes and a WE leadership program at a local elementary school. Since then things have changed drastically. So much so that we are now in self isolation in order to protect ourselves from a nasty virus going around right now. Which makes these few visits super special to me now.
One of my all time favourite things to do is be in the classroom (probably why I am a teacher LOL). Being a teacher is amazing but there is something very different about coming in and talking to young kids about really grown up stuff.
The Kindergarden kids were amazing as I sat and used big words like, Down syndrome, chromosomes, inclusion, kindness, and more. What's so important to note is, these kids are ready to hear these words. They want an explanation. They have questions about their classmates. Not every single child, but there are some who do. Even at this age, they notice differences, they HAVE QUESTIONS. I love to talk about differences with them. I love to hear their perspective and ideas.
I also got an opportunity to speak with a Leadership group that had plans on creating their own presentation about Down syndrome, WDSD, and Inclusion. I am certain they will not get this opportunity now, but at least they have the framework for it should the opportunity ever arise. I absolutely LOVED this idea of sitting with them to prep them for doing their own presentation. I always think that students receive any message better when it comes from their peers.
I have done this type of thing in the past and it's one of my favourite things to do. If there are ever any other schools out there that are running a leadership program, I would love to come in and meet with your group. I can try to help them come up with facts, talking points, a mothers perspective...whatever else they might find helpful.
We did one of the activities from the Resources page here on the site. I will link that page here. This is, "Demonstrating Fine Motor Challenges."
Please don't hesitate to email me if you think this would be a good fit for your group. I would love to set something up!!
]]>Had a blast at Capaz Cafe for their open house in honour of World Down Syndrome Day (WDSD). WDSD is actually on March 21st every year. We celebrate on the 21st day of the 3rd month to honour the 3rd copy of the 21st chromosome that leads to Down syndrome. However, we thought we would get into the spirit early this year.
Capaz Cafe is a new business that just recently opened at the end of 2019. It is run by the loveliest of them all, Lucy. Her vision for this cafe is to empower people with disabilities by highlighting their capabilities, and showing our community that all people have value, and the desire to work. Her coffee shop employs people with various disabilities, and gives them a place to have meaningful employment. She teaches them the necessary skills needed to gain the experience and build their resume, which will then lead to more opportunities to be employed in our community.
On Sunday she, along with us at CHF, opened the doors to the community and invited anyone and everyone in to share her passion. We had so much fun hanging out, doing crafts, playing games, eating snacks, and drinking delicious coffee!
Aksel came to hang out and sign autographs since he was the co-designer of the socks this year. It was the sweetest thing seeing him walk around with his photo all signed up.
We were inspired to sponsor this event as Capaz employs individuals with Down syndrome. We wanted to give the community a chance to come together to witness the capabilities, value, and dedication these young people have. Lucy's dedication to her employees to help them gain marketable skills for future employment is exemplary. We wanted to share it with the Windsor/Essex community.
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We got the unique experience of being invited into the council chambers to get our photo taken with the Mayor, Drew Dilkens and the rest of the council members, who were all rocking this years CH socks!
It was a blast to see the kids in that huge room with all the grown ups, including the sock designer Aksel. Everyone was so happy to stand together and show off their funky socks for WDSD.
We are so lucky to live in a community that supports our efforts in advocating for those who have Down syndrome. We were honoured to be there, and appreciate the efforts made by all those involved. A special thanks to Jason Parent, head of CUPE Local 543, for purchasing the socks for all the council members and arranging our visit.
We truly appreciate the experience and can't thank you enough!
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Once again this year, for those that might be new here, Elizabeth an extremely talented designer who has so generously donated her time and energy to bringing us the most perfect sock design to wear on World Down Syndrome Day. Her design page is Mottoform - click to see how pretty!
This day occurs on the 21st day of the 3rd month because we celebrate the 3rd copy of the 21st chromosome which is what leads to Down syndrome. WDSD exists to celebrate individuals with Down syndrome by choosing activities that show support and awareness to those individuals. Rocking Socks has become and easy, attainable and VERY visual way to demonstrate this support around the globe. This movement is seeking to share what it IS to have Down syndrome - something to be celebrated. It’s a day of advocating for the inclusion, respect and understanding that individuals with Down syndrome have a great deal to offer their communities. To read more visit World Down Syndrome Day
The sock process has been very eye-opening for me personally, as I could never have imagined just how much work goes into making sure the design is perfect and then produced exactly the way we envision it. Just to give you an idea of what is happening behind the scenes. The process starts in mid-summer, and I do not get socks in my hands until February. It involves many emails, meetings, phone calls...etc. before the final product is ready for you!
Let me give you a bit of background on how Elizabeth and I met. We met shortly after a mutual friend told us we both had just recently had children. Her, a son named Aksel. Me, a daughter, Hazel. Both born with Down syndrome. Our first meeting was when the babies were around 7 months old. SWOON! Over the last seven years our friendship has grown, along with our families. We both have two other daughters with very similar personalities. Send help! HA!
When I approached Elizabeth about the sock design process (fully admitting I couldn’t afford her), she so graciously agreed to design for this project. It takes countless hours to design socks. From start to finish it’s about 9 months. She brought us a super fun design last year!
I am so grateful to her for her mind, her talented eye, her attention to detail, and her time. The most valued of all commodities. THIS YEAR she had a co-contributor.
He is responsible for the design inspiration for this years #chfwdsd2020 socks. He was the co-contributor in the design process. How cool is that?!
He had done an art project for school and Elizabeth had the idea to use it to design. This is a picture of him just as she was explaining that this was the final product sock, AND that HIS ARTWORK was used to create it!!! Look at his smile! He's so proud. How many opportunities do kids get to do something like this? To actually see that their creativity, and work can become something concrete? It's incredible!
In his lap is the art project along with the socks. Elizabeth just copied the design and extended it into a pattern. So clever!!!! I’m so hoping a designer was born through this project. Giving opportunities like this means everything! Thank you to Aksel for your super cool design this year. The socks are amazing with your talent!!!
Socks are available in the shop. I am happy to ship them, If you are a US Resident please order soon so I can get them out to you for #WDSD - Let’s show this little man how much we love these socks and put money into a charity that supports people with Down syndrome in Windsor/Essex. Click here to see exactly what the purchase of socks is supporting.
It was one of our smaller groups last night but still full of life and laughter. I literally LIVE for this night. We all get to relax, catch up, talk Down syndrome, and PLAY! It's music to my ears when the kids give their parents a hard time about leaving. YAY!!! We must be doing something right!
Love this twining look guys!!!
Hazel was giggling so much playing with Matthew. SWOON!
These two were making me melt into a puddle...
I love getting this opportunity to visit and see what families are up to. I don't take for granted that everyone is VERY busy, yet still chooses to spend time with us at the playgroup. It's kinda my favourite!
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When I was pregnant with Hazel, we left the house at 4am with some complications. We did not return home for almost 8 weeks in total. We spent 2 weeks on bedrest in the hospital in London before she was born, and 5 weeks and 2 days after she arrived. In that time, we felt all the feels: lonely, scared, isolated, confused. If it weren't for the support of our family and friends, it would have been unbearable. Our family was always there. They brought us food, comfort items from home, presents for baby Hazel. Many times just came to sit and visit with us so we knew we were loved. Our friends organized a donation, and handed us quite a bit of money to cover costs, like gas. Since Matt was trying to work as much as possible there were a lot of travel costs. Costs like food. Even though we were at the RMH for that time, we still found we had some extra expenses. Not to mention still paying the bills back home.
Needless to say the kind, and generous gesture was greatly appreciated. It not only helped us in a very practical way, but it reminded us that we were not alone; that we had support, prayers, and people rooting for and supporting us.
That's why we now try to pay it forward with CHF. With the help of our supporters, generous donors, and people who buy our swag, we are able to provide comfort packages that support families, and hopefully make them feel just like we felt when our people reached out to us. Loved, supported, and SEEN.
Comfort packages are available on a case-by-case basis, and vary from family to family. We strive to accurately reflect the individual families needs and make an impact that appropriately suits them. They are available on a reference based system so if you ever know of anyone that needs a little support please feel free to email us here with the subject line: Supporting Families and tell us a bit about the family and their circumstances.
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This child. This child that sparked a light in me, turned 8 this week. When she was born we knew that our life would be full of greatness. Don't get me wrong, it is NOT without its challenges, but greatness indeed follows. It was also not without fear. But from the deepest of fear and despair, courage and joy can emerge. Now I fear that WITHOUT this child, we would have never learned this hard, but beautiful truth about life.
This child who taught how to love much deeper than we could have previously understood. This child who has shown us that we aren't all made the same, but we are created equal. This child who has introduced us to a world that would likely still be hidden to us (the thought makes me shudder). It's like we received a personal invitation into this whole, big, world that is full of diversity, difference, and wonder.
These two children who inspire me everyday to see value in ALL things, no matter how insignificant or monumental they may seem. There is no such thing as insignificant, when an effort to achieve has been put in.
Without these children, the call to be active members in the community would not have been so profound. It is our biggest honour and joy to know all of the families in this community that have loved ones with Down syndrome. It is our blessing to call so so SO many of these people friends. It is our duty to keep shouting, and advocating for inclusion/opportunity for all people, especially those who are the some of the strongest people we know - people with Down syndrome.
Happy Birthday to Hazel. I've said this before, I will say it again:
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As 2020 is beginning we are working diligently on getting the CHF Speech, Friendship, and Communication Group back up and running. We were able to service around 50 children last year, and are hoping that number grows this year. We are VERY proud of this resource, and all the benefits it has been offering our local families.
***It is available to individuals with Down syndrome ages 2 and up. Please do not hesitate to email if you are interested in more information or signing up for the group.
Participants are in groups of 3-4, geared to developing communication and conversation skills amongst peers. Traditional speech and language therapy is imbedded within a natural communicative situation. Many children feel comfortable using communication within familiar settings and with adults in their environment. CHF groups facilitate and develop the natural back and forth conversation a child or teen would naturally have with peers.
The group is geared toward initiating, directing, asking questions and getting interested in the likes and needs of their peers.
Each child’s individual communication goals and concerns will be incorporated into the group session. This can include motor speech goals, language goals, social language goals, and behaviour issues. Each participant will receive a detailed report which will outline individual goals, and practical activities to implement those goals at home or at school.
GROUP FOCUS:
The focus for all of the age groups is to develop communication skills through verbal, gestures, and communication systems. The specific focus for each age group is listed below. NOTE: Ability grouping (not based on age) may occur depending on the needs of each individual participant with the goal being to find a functional group dynamic.
2-4 Year olds: Focus is for children to notice each other and initiate interactions with each other. Children begin to learn to take turns and share in this group. Early emotions and identification of these emotions are introduced. Parent training includes turn taking within an interaction, motor speech development and the use of social function of language.
5-8- Year olds: Children continue to learn to turn take and share within this group. The focus is for children to initiate with each other and learn the beginning steps of perspective taking. Identification and explanations of emotions are targeted. Parent training includes the use of social function of language in your child’s environment and with others. Teaching them to notice and understand that people have different wants and how to ask questions to peers.
9-12 Year olds: Children learn to work on emotion identification and management, perspective taking and conversation rules. Parent training includes balancing interactions with questions and comments, friendship and interaction skills and the use of social function of language.
13-16 Year olds: Teens learn to identify emotions and modify communication and behaviour based on the perspectives of others. The focus is for teens to interact and initiate with each other. Parent training includes developing perspective taking, modifying behaviours based on social expectations, and the use of social function of language.
17 & Up: The focus of this group is to work on beginning or developing skills like job placement conversation, executive functioning for increased independent work habits, and interview skills for co-op and job interviews. Parent training includes developing and encouraging opportunities for the individual to be independent.
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After piloting the program in the summer of 2018, I personally became a participant just over a year ago when I realized that I need to step up my fitness game. The program encourages everyone and anyone, of all abilities and fitness levels, to come out and have some fun in a team environment, while working up a sweat and getting that heart rate up. This fully inclusive program is modified to each athletes level so no matter who you are, you will fit in and be able to participate.
Over the last year I have seen relationships cultivated, conversations shared, encouragement and support given, and skills mastered. I have seen all our adaptive athletes grow to feel comfortable and confident in the gym. It has been such an amazing thing to witness.
This is Adam. He’s my partner every Tuesday. He’s fast, strong, and never quits. Doing synchronized burpees with him last class nearly killed me. He pushes me to work hard each time. He’s never intimidated by trying new movements. Also, he grabs my equipment for me, he makes sure I have a space to work, he advocates for me. His abilities shine in the box and he makes everyone smile (except for me when we are doing burpees HA!).
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Julia Lane has just broken 4 World Records!
An award ceremony will take place on Saturday December 7th at 5:45 on the pool deck to present Julia with her World Record Certificates.
The 20 year old swimmer from Windsor is the new World Down Syndrome Short Course record holder in the 50 fly, 100 free, 200 free and 400 free.
Julia broke her first three records on November 3rd at a small meet in Windsor. Three weeks later in London, Ontario, Julia added another record in the 400 free with a time of 6:58.72. These amazing accomplishments were unbeknownst to her family at the time. It wasn’t until a fellow athlete with Down Syndrome and record holder from the East Coast saw Julia’s times and called the family to congratulate her. Julia was very surprised to hear the news but also extremely excited and proud. Julia and her family attribute her cross-fit training at All Level CrossFit which she began a year and a half ago, to her recent successes. Since adding the training along with her swim practices, she has become much stronger and faster.
This weekend, Julia will get another opportunity to break more records or better the ones she has. The Windsor Aquatic Club is hosting the Border City International meet at the Windsor Aquatic Centre. Nineteen teams from Canada and the US will be participating at this meet. Although she has been ill this past week, she is still hopeful that a few more records will fall. “I’m so pumped up for this meet and I want to break the 50 free record”, exclaimed Julia. With 900 swimmers competing, there should be lots of excitement at the pool to help her get pumped up.
]]>We had a fantastic turnout last night for our Down syndrome community playgroup at St. Clair College. I loved seeing all the parents talk with each other, laugh, and smile while their kids played. It's such an honour to spend a couple hours with these families, and catch up with everyone!
We have the BEST volunteers ever, who come out each time with positive attitudes, and last night their very best Christmas sweaters!!
Yes!!! They hugged - SWOON!!!
This group is open to anyone in the local Down syndrome community that has children ages 0-12. Please feel free to email me for more information on how you can attend the next playgroup. We absolutely LOVE welcoming new families!!!
]]>This week I had the honour and privilege of sharing our story, our family, our experiences, and our passion with 2 amazing groups of future educators. I always feel so grateful to have the attention of these young learners. Grateful to have them hopefully leave with a more detailed, accurate portrayal of what a family raising a child with a disability might look like. I am hopeful that they leave with an understanding of the impact that they themselves, have on a child's education and potentially that child's family as a whole.
Thank you so much for having me this week new friends and future educators!! You truly make me so excited for the future of education.
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The "OFF to COLLEGE" playgroup had it's first official gathering of the 2019 school year. This is a group that CHF has started in partnership with St. Clair College to welcome new families into the Down syndrome community. It is also, a space where friends who already know each other get a chance to connect, talk, and share experiences and ideas with each other. Raising a child with Down syndrome is a lot like raising any child, however at times it is valuable to be able to speak to others that have had similar experiences. It is comforting to chat with other parents who are compassionate to your specific situation and can relate to exactly how you might be feeling.
You may have also noticed we have a brand-spankin' new brand identity and logo. As we grow we need a brand that will be more flexible and something that represents us through this growth. The first thing you'll see is we've dropped the "The" so it's just Chasing Hazel Foundation instead of The Chasing Hazel Foundation. One, because it's shorter and cleaner, and two, it allowed us to play with the acronym 'CH' which we'll explain. We wanted to develop an icon that you'll recognize right away and was easy to apply on multiple mediums. As mentioned before, the shape resembles a 'C' and an 'H' for Chasing Hazel, it's also three chromosomes to convey 'trisomy' and loosely resembles socks because we love them so much! There are also a couple other brand elements you'll see used in conjunction with everything. Keep a look out as we expand on our brand and launch many new, exciting items.
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