Connexions Blog

"Building stronger communities by sharing inspiration, advice, and best practices that work".



Holidays with Alex, Part II

Author: Jen Franklin Kearns, ds-connex team member

Two years ago, we shared how my family celebrates the holidays; having a son with Down syndrome, we find ourselves toning down the holiday chaos as much as we can in order for the experience to be as joyful as possible for everyone. Alex, now officially a teenager, still needs modifications to our holiday activities. What I’m learning, though, is that these modifications are allowing our entire family to enjoy a more peaceful holiday season.

Alex and Jen

We all know how it is: once the Thanksgiving leftovers are put away, we are bombarded with opportunities to celebrate the impending holidays. Parties, visits with Santa, gift exchanges, shopping, family get-togethers, cookie baking, list making – all on top of our already busy schedules – is quite overwhelming for all of us. Alex just can’t handle it all; the older he gets, the more adamant he is about staying home and relaxing rather than facing all the crowds and commotion. Honestly, I can’t say that I blame him; why fight the crowds when you can stay home in your fuzzy Christmas slippers? With the ease of online shopping, the gifts can still be purchased. Instead of visiting a public light display, we can admire the lights in our neighborhood as we drive home in the evenings. Rather than waiting in line at the mall, we can take advantage of a sensory friendly Santa event. This may mean that certain things are crossed off my To-Do list, like Pinterest-y crafts, fancy gift wrapping decorations, or even a lengthy Christmas card list. While I initially struggled with the idea of limiting myself during the holidays, I’m finding that in the end, I actually enjoy having less to do.

Alex Addie Andrew with Santa

These slight accommodations help with my own holiday stress. Christmas is more enjoyable when I’m not listening to the kids scream at each other while we sit in mall traffic. My younger children are just fine with our less hectic holiday schedule. Frankly, if Mom isn’t stressed, then everyone is a bit happier, right? No one feels like we’re missing out on any holiday cheer, because we’re still participating in the traditions of the season. It just looks a little bit different than it may have in the past, in order to include everyone.

When our entire family can find the joy of the holidays, then that’s all that truly matters. From my family to yours, we wish you a lovely holiday season.


Ugly Sweater Contest - Win something for yourself and your 2018 team!

Author: Jen Franklin Kearns, ds-connex team member

Team captains are often the driving force behind successful walk events; our research shows that 87% of walk event funds are raised by team captains. We encourage team captains to plan year round in order to maximize their fundraising efforts during walk season. To that end, we are happy to announce our first annual Team Captain Ugly Sweater Contest!

Ugly sweater

Beginning Saturday, 11/25, we invite team captains to send in photos of their family, friends, or pets wearing their ugly holiday sweaters to contests@ds-connex.org. We will collect photos through Wednesday, 12/13 and post all of the photos in an album on our Facebook page. On Thursday, 12/14, a winner will be randomly selected to win a $50 Amazon e-gift card as well as a $100 donation to their 2018 walk team!

We hope that this will be a fun way to keep your team members engaged in your fundraising efforts while you showcase all of your holiday spirit. We can’t wait to see your photos!

Contest notes: Please include your name, city, and walk event name with your photo submission. When submitting entries using a mobile device, please ensure that “ds-connex” is not autocorrected (we’d hate to miss out on receiving your entry!). Randomly selected entries will be used as content for the ds-connex social media platforms beginning 11/27. By entering into the contest, you are granting ds-connex permission to edit your submission for grammar and/or length, and use the submitted photo and story in ds-connex social media posts and website. The winner will receive the Amazon e-gift card at the end of Team Captain Ugly Sweater Contest, and the team donation will be posted to your walk event’s fundraising site as soon as it opens.


Walk Team Spotlight - Team Jack the Great of the Grand Strand Buddy Walk®

Author: Jen Franklin Kearns, ds-connex team member

In the spirit of celebrating Down Syndrome Awareness Month, we are excited to share another Team Spotlight. On Saturday, October 21st, the Grand Strand Down Syndrome Society celebrated its Fifth Annual Buddy Walk® event at Grand Park at Market Commons in Myrtle Beach, SC. Denise and Joe Brown, team captains for one of the top fundraising teams for GSDSS, Team Jack the Great, were happy to share their story with us.

Team Jack the Great was formed in honor of Denise and Joe’s son Jack, who has a twin brother, Evan; the boys recently celebrated their first birthday. Jack loves bananas, the Noisy Farm book, and the movie The Secret Life of Pets. Jack is now crawling and pulling up, and Evan has provided the motivation to help push his brother. Jack tries his best to keep up with his brother, who is now walking. .

Grand Strand Buddy Walk - Jack the Great

Jack was just six months old at the 2016 Grand Strand Buddy Walk®, but the Browns first connected to the GSDSS while the twins were still in the NICU. Joe discovered the organization when he searched online for information regarding Down syndrome, and after a brief discussion, the Browns decided to create a team for the 2016 Grand Strand Buddy Walk®. In the short period of time from the twins’ birth, Denise and Joe had tried to absorb as much knowledge as possible regarding Down syndrome, but they felt they were probably still “clueless.” They thought it would be beneficial to get involved with the event, as they would have an opportunity to meet other families on the same journey. “We needed to meet all these great people with Down syndrome,” Denise shared.


The Brown family has learned that people enjoy being involved with the Grand Strand Buddy Walk® every year. “It hasn’t been really hard to get people to join our team,” Denise said. “I can say that Jack is loved by a lot of people and it makes it easier to get folks involved. Jack is the key to our fundraising. We visit with family, friends, and businesses; we share our journey. Most of them go on to tell others about our Jack the Great. Being present in the community has been great for Jack’s team.”

To Denise and Joe, it is important that their team members see Jack, and not just his Down syndrome diagnosis. “Jack proves to them all the time that challenges are not limits. He can do most of the things Evan does; he just does them on his own time. Also, they learn right away that once they are part of our team, they are a part of our lives. Our team just doesn’t end with the Buddy Walk® season. They become part of Jack and Evan’s lives.”

Grand Strand Buddy Walk - DownWithZee

When describing the event, they call it a “celebration and festival,” as there is so much more than just the walk. “There are all ages of people with Down syndrome represented. There is music, talking, and laughter in the park. There’s dancing, face painting, games, and crafts. It is a place to meet, talk, and support our buddies.”

Denise’s favorite memory of the walk was the feeling of overwhelming support and love. Their families and friends rallied for Jack, and they raised a “surprising amount of money.” It eased some of Denise’s concerns to see all of the support from so many people.

This year, for their second Grand Strand Buddy Walk®, Team Jack the Great raised $3575 for the Grand Strand Down Syndrome Society! We’ll look forward to watching the team’s efforts grow along with Jack and Evan.

This post is a part of our ongoing Walk Team Spotlight blog series, which profiles Down syndrome walk teams sharing their unique backstories, as well as fundraising, recruitment and networking tips! Check back for future posts in this series coming soon. Submit your story ideas to: support@ds-connex.org.


Walk Team Spotlight - #DownWithZee of the Grand Strand Buddy Walk®

Author: Jen Franklin Kearns, ds-connex team member

On Saturday, October 21st, the Grand Strand Down Syndrome Society will celebrate its Fifth Annual Buddy Walk® event at Grand Park at Market Commons in Myrtle Beach, SC. Hoping to raise $40,000 this year, the GSDSS relies on its many team captains to help them raise funds for valuable programming offered to individuals with Down syndrome and their families. We were pleased to connect with team captain Vona Shodja, who was kind enough to share her family’s story.

“Zahra Zoë Shodja (aka ZeeZee) is a sweet and feisty girl, now almost 9 months old. She absolutely positively adores her older brother, Mikah. Whenever he is around, she lights up! I watch her constantly try and mimic him - so when he is dancing around, she is dancing around. When he is giggling, she just loses it! They love to watch Dinotrucks on Netflix together. I am not sure what it is about this show in particular, because it seems to be the only thing we put on tv that gets her attention. I wonder if it is the colors or the shapes of the characters, perhaps. She also loves for us to read or sing together. I haven’t noticed that she has a favorite book or song, but she likes to snuggle up together and make eye contact while doing those things.

Grand Strand Buddy Walk - DownWithZee

ZeeZee works hard at her therapy appointments and excels at reaching and playing with rattles and toys, is a very messy but eager eater, likes to drink water from a cup, and she is starting to learn to sit up on her own - though she gets pretty mad when we try to make her crawl! We have lots of faith that she will get to that before we know it. She constantly jabbers, ‘Dada dada’ and when in her activity bouncy chair, she is always rocking and rolling!


This girl makes us smile multiple times every single day. Whether it is because she looks me in the eye and grins, or when she pats me on the shoulder while I hold her, or when she tries to gnaw at my chin, when I notice that she is curious and reaching for things to try out…I cannot explain (but if you are a mommy you already know), just how proud I am of her, and also how grateful I am to be living a life with her in it. She has already changed so many lives and she isn’t even a year old yet.

Our team name is #DownWithZee. We named it after the slogan we started when she was born, which we actually turned into a shirt business, which has essentially morphed into a Down syndrome/ humanity advocacy mission! (Our website is www.downwithzee.com) Basically, we believe that when people connect and start conversations, they are able to release any fears they may have about people who are “different” from them, and actually become meaningful to each other’s lives.

Grand Strand Buddy Walk - DownWithZee

This is my fourth time participating in the Grand Strand Buddy Walk (though it is the first time our team had this name). Originally I just participated because I wanted to. I have always had a place in my heart for people with Down syndrome (as a teen and in my 20s I volunteered with lots of kids with varying abilities). The next time I walked I decided to honor a friend of mine who lives in Pennsylvania who had a son with Down syndrome. The third year I still wanted to honor Evan, but lo and behold I was also pregnant and had learned only days before the walk that my baby would likely have Down syndrome, too. This year I walk for all humans! While the money we raise is specifically being raised for Down syndrome, in my heart the purpose is for every human to be allowed a life full of love, acceptance and dreams that come true! I would love for anyone interested to join our team or help raise money on ZeeZee’s behalf. So far we have used Facebook, our website’s blog, or direct conversation to invite people to be involved and some of those people have helped spread the word. I would say the most successful way for us to fundraise so far has been via Facebook. People who already know (or know of) us and love us are very gracious and compelled to give. We have promised that when we sell shirts from our site during September and October, a percentage of those sales will get donated to the cause.

I hope our team members really become educated about Down syndrome, and help enlighten the rest of the world to open their arms and hearts to some very beautiful gifts that people who have DS are! Generally I tell people that this walk is a fun event where we can gather, learn, communicate, teach and advocate. The walk itself is short and simple, but a lot of special moments and conversations happen during it. Last year my team was pretty small (me, my husband, our son, and our babysitter)…and I was super pregnant! We arrived at the event, cheered everyone on during the awards ceremony, and walked while connecting with new friends. After the event we enjoyed time on the playground nearby! This year we may have a similar experience - although now Zee is here so the experience may reach a deeper part of our hearts than even before.

Last year during the walk a girl started walking and talking with us. She was very sweet and began to inquire about the baby in my belly. Since I had recently gotten the news that ZeeZee may have Down syndrome, it was one of the first times I told anyone about the probable diagnosis out loud- especially to a stranger. Even though we were a bit fearful of what was to come, there was still an overall sense of gratitude and peacefulness that day when I spoke about it out loud. The girl wished us well and life went on. Later, after ZeeZee was born, she found us again as we became somewhat more popular through our #DownWithZee campaign and as we became more involved with the Grand Strand Down Syndrome Society. She was so excited to see the baby who had been born since our walk. It felt very special to me to be remembered!

To a new family in the Down syndrome community, I would say if you are interested in participating in the Buddy Walk®, just do it. There are no huge overwhelming expectations, every dollar counts, and our kiddos are worth it! When it comes to fundraising, just get creative, have fun, and ask everyone…ya never know who will respond. I have found that most people who have met ZeeZee have a story of their own about someone they love with DS. So odds are in your favor!”

Thank you, Vona, for sharing your family’s story! We hope you have a wonderful time at the 2017 Grand Strand Buddy Walk®!

This post is a part of our ongoing Walk Team Spotlight blog series, which profiles Down syndrome walk teams sharing their unique backstories, as well as fundraising, recruitment and networking tips! Check back for future posts in this series coming soon. Submit your story ideas to: support@ds-connex.org.