Connexions Blog

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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.


Walk Team Spotlight - For the Love of Kai of the WIUSD Buddy Walk®

Author: Jen Franklin Kearns, ds-connex team member

On Sunday, October 8th, the Wisconsin Upside Down organization will celebrate its 2017 Buddy Walk® event at North Shore Middle School in Hartland, WI. Hoping to raise $25,000 this year, there are more than twenty teams working hard to meet that goal. We had the pleasure of learning more about one of these teams, For the Love of Kai, from team captain (and mom!) Ashley Reyes.

Kai is a spunky one year old with a contagious laugh who loves to play with his sister, watch Baby Einstein DVDs, and pet animals. He has recently started crawling, self-feeding, and has been trying to pull to stand. For the Love of Kai walks in his honor, and this will be the team’s second year at the WIUSD Buddy Walk®.

WIUSD Buddy Walk - For the love of Kai

Ashley first became involved with WIUSD after connecting with Robbin Lyons, President and Co-founder of WIUSD, at the suggestion of the social worker at the hospital where Kai was in the NICU. When she met with Robbin, plans for the 2016 walk were already underway, and Robbin encouraged Ashley and her family to attend the walk so they could meet other families. Because they wanted to know what to expect in the coming years, they decided to go to the walk. “Sometimes the unknown can be scary, but we realized there was not much to be worried about really; he will reach all the same milestones as typical children,” Ashley shared.


This year, the Reyes family is walking to share their love and support for Kai as well as to help WIUSD reach their financial goal so they can continue to provide new families with the same guidance and support that Kai’s family received. Ashley’s most successful fundraising tactic so far has been to network with her family and friends to determine which local businesses could donate to their team. This is a great opportunity for businesses to advertise locally while helping their community. Ashley explained that “there are many businesses that want to help local non-profits and just need you to ask. Some businesses knew me or my family member or friend, but many did not and still were excited to help the cause!”

To recruit team members, Ashley lets friends and family members know how much WIUSD has done for her family, and explains that she wants to help their mission. She also encourages them to invite the people they know to walk with them, too, in support of Kai. Ashley hopes that her team members enjoy the day, but she also wants them to see the community that their donations are helping by raising money for WIUSD. Her team can expect a “very enjoyable day for the whole family and to meet some very sweet and enjoyable people.”

Ashley would encourage new families to get involved in the walk: “Just go for it, with gusto!” She shared that she fundraises because “of all of the support I received from WIUSD when I didn’t even know I needed it.” She also explained that she is “passionate about making sure WIUSD can help others the way they have helped me, and I make sure people I am asking for money know this.”

Having raised more than $4770 so far, Ashley has nearly met her fundraising goal; you can support her team’s fundraising here. We hope that For the Love of Kai has a wonderful time at this year’s WIUSD 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.


Walk Team Spotlight - The ‘A’ Team of the CDSC Buddy Walk®

Author: Jen Franklin Kearns, ds-connex team member

On Saturday, September 30th, the Connecticut Down Syndrome Congress will celebrate its 2017 CDSC Buddy Walk® event at Rentschler Field in East Hartford, Connecticut. Hoping to raise $100,000, the CDSC has 50 teams raising funds to help reach that goal. We had the pleasure of chatting with JoEllen and Tony Stancil, of The ‘A’ Team, to hear about their unique journey in the Down syndrome community.

CDSC Buddy Walk - A team

Two years ago, the Stancils were made aware of a young lady with Down syndrome, living in an Eastern European orphanage, through friends who were undergoing the international adoption process. JoEllen and Tony were so touched by this young lady’s story (due to strict adoption guidelines, we aren’t able to publish her name, so we will simply call her “A”) that they made the decision to begin the adoption process to bring A home. The international adoption process is lengthy and expensive; there are home studies, endless paperwork, training and online classes to endure before someone travels overseas to meet the child and attend a court hearing. The Stancils felt so strongly that A belongs in their family that they jumped right into the process. They were able to travel to meet A earlier this year, but they are still waiting to finalize her adoption so they can bring her home.


While researching local resources for individuals with Down syndrome, JoEllen came across the CDSC website. She reached out to the organization and learned of the 2015 Buddy Walk®; JoEllen and Tony attended the walk that year, and were able to meet other local families with loved ones with Down syndrome, collect more information, and share their story. They were initially intimidated to attend the walk, as they don’t yet live the day-to-day routine with a child with Down syndrome. However, they felt welcomed and accepted by the CDSC community. The following year, JoEllen attended the walk again, and felt the same gracious acceptance of her presence at the event. This year, even though A isn’t home yet, they created their own team for the CDSC Buddy Walk®. Because they are very restricted by what they can share about A on social media, fundraising is a bit difficult, but they are hoping that A can join them next year and then they will plan to do more fundraising. They will have a tent set up at the walk this year for their team, with light refreshments, but next year they plan to go all out. They will follow A’s lead, as they are certain that she will have specific ideas as to what she wants to do.


“She is quite the kiddo,” the Stancils said. A very outgoing, gregarious young lady, A immediately stole Tony’s hat when they spent time with her earlier this year. “She turned it around and became a rapper,” JoEllen explained. A and Tony enjoyed rapping together; A loves music and dancing. She also loves to eat (but not cooking), and she enjoys the beach (she and JoEllen have this in common). “She is an amazing, amazing girl,” JoEllen shared. “She is just like my other kids. She enjoys sarcasm, just like they do. She’s awesome. It’s as if she was raised with me in mind.”

By participating in the walk this year, the Stancils hope that their family and friends see that “adoption is an option.” “There are kids with Down syndrome around the world who need homes. Internationally, there are orphanages full of children with disabilities who need families,” Tony explained. The Stancils want people to see them and hear their story, that a couple in their 50s are adopting a teenager, and hope that it inspires other families to consider adoption. “They have value and worth, just like any other human being. They are wonderful people. They need families like those you’ll see at the Buddy Walk.” Even if it’s just one family who makes the connection, the Stancils will feel accomplished in inspiring others to consider adoption.

JoEllen’s favorite memory of the Buddy Walk® is meeting the families, and hearing their experiences in raising a child with Down syndrome. By attending the walk, families can realize that they are not alone; there are others with the same daily struggles but also the same daily blessings.

We look forward to following along with the Stancils journey, and seeing their celebration next year when A can join them for the 2018 CDSC 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.


It’s Time to Recognize the Super Sibs Again!

Author: Jen Franklin Kearns, ds-connex team member

This October, in observance of Down Syndrome Awareness Month, we want to once again recognize the Super Sibs of our loved ones with Down syndrome! Siblings tend to be very aware of the impact of having a brother or sister with extra needs, and we often hear amazing stories about how they love, encourage, and embrace both the highs and lows of their relationships with their siblings with Down syndrome. We want to take the opportunity to highlight these examples, because we believe that children are the key to a future of an inclusive world. Furthermore, we know that these Super Sibs are key players in leading this movement.

Super Sibs


Please join us in applauding the amazing sibling relationships within the Down syndrome community. The contest details are outlined below; we can’t wait to read about your Super Sibs!

Contest details:

Contest entries should be submitted via email to contests@ds-connex.org, beginning September 22, 2017. All submissions will require a photo with a brief story (3-4 sentences) of how the sibling is supportive of their family member with Down syndrome.

We will accept submissions through the end of October. Randomly selected entries will be used as content for the ds-connex Facebook page beginning 10/1. All submissions will be included in an album to be hosted on the ds-connex Facebook page, which will be posted at the end of October. 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. We will only use the first name of siblings in our promotions.

(Please note: When submitting an entry from a mobile device, please be advised that the “connex” segment of our email address may be autocorrected, preventing your entry from reaching us. If you do not receive a confirmation of your entry, please try sending it again.)

We will have a random drawing to select 10 winners, who will each be awarded $25 gift cards. Winners will be announced on the ds-connex Facebook page on November 1st. Winners can select to receive gift cards from the following: Amazon, Toys-R-Us, Target, or Barnes & Noble.