Connexions Blog

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



In Honor of Our Dads: The 2018 #DownSyndromeDads Contest is back!

Author: Jen Franklin Kearns, ds-connex team member

In honor of Father’s Day and great dads of kids with disabilities everywhere, ds-connex is excited to announce the 5th Annual #DownSyndromeDads Contest to recognize and celebrate these amazing fathers!

    Contest Overview

Starting Tuesday, May 22nd, nominate the fantastic #DownSyndromeDads in your life by sending a photo and brief (one to three sentences), meaningful message about him to ds-connex. Please send your submissions to contests@ds-connex.org.

downsyndromedads Fathers Day 2018

All photos and descriptions will be posted to a 2018 #DownSyndromeDads photo album on the ds-connex Facebook page. All nominators and #DownSyndromeDads are encouraged to promote the contest and ask friends and family members on Facebook to vote for them by liking their photo in the 2018 #DownSyndromeDads album.

The 1st prize winner will receive a $250 donation to their Down syndrome walk team along with a $100 Home Depot gift card. The second prize winner will be awarded a $100 team donation along with a $50 Home Depot gift card.

    Details for This Year’s Contest

The ds-connex team will collect #DownSyndromeDads nominations from May 22nd until midnight EST on June 7th. The Facebook album will be posted after June 8th, at which time voting will begin. We will notify nominators via email when the album is posted and voting begins, and we will conclude voting on Monday, June 18th at 9:30am EST, when the winners of the contest will be determined. The winners will be chosen based on the total of likes (or reactions, to include “love,” etc) on the photos in the #DownSyndromeDads photo album on the ds-connex Facebook page during the voting period. The #DownSyndromeDads contest participants must observe Facebook’s policies. Please note that in order for your entry to be included in the voting, we must receive your entry by midnight on June 7th. We will happily include entries submitted after 6/7 in the Facebook album, but they will not be eligible for the prizes. Results of the contest will be announced on our Facebook page on Monday, June 18th.

    Please note…

We welcome participants in last year’s contest to re-enter with a new photo!

By nominating someone for the #DownSyndromeDads program, you are giving ds-connex permission to edit your submission for grammar and/or length, and to share your submission via the Connexions blog and across multiple social platforms, in order to raise awareness and appreciation of fathers in the Down syndrome community and all they do. The #DownSyndromeDads contest is sponsored by ds-connex.

We look forward to seeing your #DownSyndromeDads entries!


The Down Syndrome – Autism Connection

Author: Jen Franklin Kearns, ds-connex team member

In honor of National Autism Awareness Month, ds-connex is pleased to feature the Down Syndrome – Autism Connection to share their mission and highlight the support they offer to families raising a child with a co-occurring diagnosis of Down syndrome and autism. We were happy to learn about the organization from their executive director, Charlotte Gray.

Down syndrome - autism connection

Founded in 2007, the Connection was established to support parents and professionals touched by the co-occurring diagnosis of Down syndrome and autism, and they are the only non-profit organization in the United States which is dedicated to serving individuals and families affected by this diagnosis. Their mission is “to provide education and support to individuals facing the unique challenges caused by co-occurring Down syndrome and autism” and their goal is to “ensure that families, teachers, and healthcare providers receive the education and support they need – with the ultimate goal being that children and adults with DS-ASD will receive the understanding, education, medical care and opportunities they so greatly deserve.”

Charlotte became involved in the organization because she has a son with DS-ASD. When her son was five years old, he received his autism diagnosis; this brought feelings of isolation for Charlotte and sparked her desire to connect and support other families on this complex journey. “I can’t tell you how much this group has helped me get through the tough times, but how much they also celebrated with me when Jake would achieve even the smallest things because they understand,” Charlotte shared.

According to the Down Syndrome – Autism Connection website, it is believed that 18-39% of individuals with Down syndrome may also have autism. The Connection has a partnership with the Massachusetts Down Syndrome Congress, and they receive many referrals from them, which allows them to reach out to the families. They also get referrals from the Down syndrome clinic at Massachusetts General Hospital, which is run by Dr. Brian Skotko. He provides the Connection’s Get Connected kits to new families getting the ASD diagnosis, and two other Down syndrome clinics in Massachusetts give the kits out to families as well. The Connection also has a partnership with the National Down Syndrome Congress, where they have their own DS-ASD track that allows them to connect to families. They are also able to support families through a closed Facebook group which currently has over 1400 members from all over the world.

DS-ASD helping families

The Connection is able to provide valuable resources by presenting at conferences and via their Facebook page, and also through a monthly online chat and quarterly e-newsletter. They also offer webinars and facilitate sharing sessions via conference calls for those who aren’t able to travel to conferences. Their Get Connected welcome kits are full of resources and inspirational stories and are great for professionals who work with individuals with DS-ASD as well as their families.

In addition to all of the networking opportunities and support offered to families, the Connection is also an influential advocate, going to the State House in Massachusetts as well as Capitol Hill in Washington to be their kids’ voices and the voices of their families to advocate on certain laws that impact their kids. They strongly encourage families to get involved as advocates by making phone calls to their representatives to explain how they can support their child’s needs. These advocacy efforts have also led to an initiative with the NDSC to change the wording on an autism research policy called the CARE Act, to include individuals with a co-occurring diagnosis so that they can be included in that policy as well.

The Down Syndrome – Autism Connection is a priceless resource for families touched by a co-occurring DS-ASD diagnosis. To learn more about their organization, please visit their website (www.ds-asd-connection.org) and Facebook page (Down Syndrome-Autism Connection Support).

If you would like to see other Down syndrome support organizations featured in our blog: submit your story ideas to: support@ds-connex.org.


It’s Time for the 4th Annual #DsTeachers Contest!

Author: Jen Franklin Kearns, ds-connex team member

Parenting is a rewarding, yet complicated (and even exasperating!) gig. It truly does take a village to raise our children, and parents in the Down syndrome community may need an even stronger tribe. Many times, teachers, mentors, coaches, and other educators are proud members of our villages and play key roles in the lives of our children. To recognize these amazing relationships, ds-connex is proud to announce the fourth annual #DsTeachers contest! May 7 – May 11, 2018, is Teacher Appreciation Week and ds-connex will celebrate great #DsTeachers with a simple Facebook campaign intended to celebrate those who make such a difference in the lives of kids with Down syndrome.

The nominators with the top three posts (the photos with the most likes) on our campaign’s Facebook album will receive a $125 (first prize), $75 (second) or $50 (third) donation from ds-connex to their Down syndrome walk team along with a $25 Barnes & Noble gift card for their child's educator.

#DSTeachers

    How to Nominate a Teacher

Starting Monday, April 16, 2018 you can nominate the terrific #DsTeachers in your child’s life by submitting a photo and a brief story to contests@ds-connex.org. Nominations may be submitted April 16th-29th. All entries must be received by the end of the day on 4/29 in order to be included in the contest. We will post all nominations to an album on the ds-connex Facebook page on the afternoon of Monday, April 30th, when voting will begin. We will tally the likes each nomination receives on their respective photo in the album. The voting will close at 12pm EST on Monday, May 7, 2018. The winners will be announced later that day via the ds-connex Facebook page.

All nominators, #DsTeachers, and schools/orgranizations are encouraged to promote the contest and ask friends and family members on Facebook to like and share their nomination post. We also encourage participants to like the ds-connex Facebook page so they can stay informed of any upcoming contest opportunities.

    And the Winner Is…

The nominators with the top three posts (most likes on their album photo) will receive a $125 (first prize), $75 (second) or $50 (third) donation from ds-connex to their Down syndrome walk team along with a $25 Barnes & Noble gift card for their child's educator.

The three educators will be announced on ds-connex social media on the afternoon of Monday, May 7th. We will highlight selected nominations, chosen at random, throughout Teacher Appreciation Week.

By nominating someone for the #DsTeachers program, you are giving ds-connex permission to share your submission via our Connexions blog and across multiple social platforms in order to raise awareness and appreciation of teachers, coaches, and mentors in the Down syndrome community. Please note that this contest is sponsored by ds-connex.

If you participated in last year’s contest, we welcome you to participate again this year!

We look forward to seeing your #DsTeachers entries soon and hearing some great stories about the special teachers and educators in your child’s life!


Walk Team Spotlight - Buddies Inc. & National Siblings Day

Author: Jen Franklin Kearns, ds-connex team member

April 10, 2018, is National Siblings Day. Because it falls on a #TeamTuesday, we thought this was a perfect opportunity to feature a young team captain who made her debut last year at the Columbus Buddy Walk, raising over $3000 for the Down Syndrome Association of Central Ohio. Addie Kearns is 11 years old, and she is currently in sixth grade. Addie’s older brother, Alex, has Down syndrome, and Addie has previously acted as co-captain for her brother’s team. Determined to do more for her community, she founded Buddies Inc in 2017 to raise money in honor of all individuals with Down syndrome. Her heart for advocacy and fundraising has impressed many, even earning her recognition as a Rising Star in her community. In addition to her fundraising and advocacy, Addie is a member of her dance studio’s company program, a diversity steward for her school, and a 4.0 student. She also enjoys drawing and crafting, playing outside, and spending time with her family. When she grows up, Addie dreams of being a physical therapist dance instructor (a role she intends to create herself if it doesn’t already exist), or a professional advocate.

Alex and Addie Sibling Love

Addie and Alex share a close bond. “Even though we fight sometimes – like most siblings do – he is the first to console me when I’m sad or if I have gotten hurt,” Addie explained. “He makes me laugh even when I don’t want to. Someone might look at Alex and think he’s different, even though everybody is. I look at Alex and he’s my brother, my human being brother, who is just like everyone else.”

For her second year as team captain for the Columbus Buddy Walk, Addie has set her fundraising goal at $5000. Just three weeks into walk season, she has already raised 20% of her goal! She is just getting started, though. So far this year, she has coordinated a spirit day at her school (raising over $700 in one day!), and she and her mom (who is also a team captain for the Columbus Buddy Walk; their family has two teams in one house!) had a fundraising challenge on World Down Syndrome Day. She also plans to host an event, Shop Along with Buddies Inc, where she will invite direct sales consultants to set up displays (in exchange for a donation to her team) for invited guests to shop. In addition, Addie is working on a presentation to share with potential team sponsors in her community.

Although Addie’s fundraising journey began when she was in second grade, it was her fifth grade teachers last year who supported and encouraged her to establish her own Buddy Walk® team. In addition to her teachers, Addie finds inspiration in her mom, DSACO President and CEO Kari Jones, and Ellen DeGeneres. “They do so much for me and my community. They inspire me every day and they fight for what’s right in my community and for people everywhere.”

Addie and Alex friends

We think Addie is pretty amazing, and we can’t wait to see what she accomplishes – not only in her fundraising this year, but life in general! To learn more about Buddies Inc, you can visit Addie’s fundraising page here.

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.