Connexions Blog

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



It’s Time to Recognize the Super Sibs!

Author: Jen Franklin Kearns, ds-connex team member

This October, in observance of Down Syndrome Awareness Month, we are excited 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. To view the submissions for 2017, please click: 2017 Super Sibs Album. 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 25th. 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 an Amazon e-gift card, a Target gift card by mail, or a Barnes & Noble by mail.


Ds-connex Presents: The Fourth Annual Summer of FUN-draising Contest!

Author: Jen Franklin Kearns, ds-connex team member

Summer days are full of fun and adventure, and we know that team captains in the Down syndrome community are also busy hosting fundraisers for their teams. We love the creativity we see, year after year, as team captains work diligently to create fundraising opportunities to support the efforts of their local Down syndrome associations.

Team fundraisers have a key role in supporting Down syndrome events. Our research reports show that 60% of top team captains host fundraisers for their teams.

How are you raising funds for your team? We want to hear from you!

From Tuesday, July 24th to Thursday, August 23rd, send us a photo from one of your team fundraisers and a short description of how the event impacts your team for the chance to win one of four $100 donations to your team from ds-connex. Team fundraisers can come in all shapes and sizes, including golf outings, ice cream socials, garage sales, kickball tournaments and more. The sky is the limit, and we are excited to learn about your fundraisers!

2018 Summer of Fundraising

Photo submissions can be emailed to ds-connex at contests@ds-connex.org. Images can be from a fundraising event for this year or last year. By submitting a photo, you are giving ds-connex permission to edit your submission for grammar/length, and share your submission via the Connexions blog and across multiple social platforms in order to raise awareness and appreciation of your fundraising efforts on behalf of the Down syndrome community. All submitted fundraising ideas will be shared on the ds-connex social media outlets with the goal of inspiring the Down syndrome community with creative fundraising ideas for team captains across the country. (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.)

One entry will be randomly selected on the following Fridays; 8/3, 8/10, 8/17, and 8/24 to win a $100 donation from ds-connex to their team. The winning entries will be announced each Friday at 2pm Eastern. The earlier you enter, the more chances you have to win!

We look forward to seeing and sharing your Summer of Fun-draising entries!


ds-connex Partner Profile: LuMind RDS

Author: Jen Franklin Kearns, ds-connex team member

ds-connex Partner Profile: LuMind RDS
Miles for Breakthroughs 5K: Saturday, July 14th - https://www.ds-stride.org/runfordsdallas
Rockin’ Moms 5K: Thursday, September 6th - https://www.ds-stride.org/rockinmom5k
Any Race Any Place: https://www.ds-stride.org/anyraceanyplace

The ds-connex team is pleased to partner with LuMind RDS this year, and we had the pleasure of learning more about the organization and its events from Katie Coughlin, Runners’ Program Coordinator for LuMind RDS.

The LuMind Research Down Syndrome Foundation, or LuMind RDS, is a national organization whose vision is to enable independence and enrich community engagement for all individuals with Down syndrome. The foundation was established in 2004 by a group of families who wanted more researchers to be focused on learning more about Down syndrome and lead to interventions that addressed many of the unmet needs that remained, such as cognition and independence, a higher risk for early-onset Alzheimer’s, speech and communication, sleep challenges such as sleep apnea. Since then, with the help of more families and friends, the foundation has awarded over $17 million dollars in grants to fund innovative research at top academic institutions, established collaborations to support more than 15 clinical trials including more than 1300 participants, developed 2 Down syndrome specific assessment scales leading to more than $30 million in additional funding.

Lumind RDS logo

LuMind RDS supports evidence-based, scientific research to prevent Alzheimer’s onset, improve cognition, develop gene therapies and advance understanding. Two of the major initiatives in 2018 include the Alzheimer’s clinical trial network and Down syndrome specific assessment scale and a promising new intervention for sleep apnea that impacts health, cognition and speech in over 50% of individuals with Down syndrome. LuMind RDS has defined a path to effectively move promising approaches for these unmet needs into clinical trials within the next five years and your miles help accelerate their progress. A small management team of five collaborate year-round with families and friends who volunteer to raise funds for research and help connect families of loved ones with Down syndrome to the research education and resources available at LuMindRDS.org, live monthly webinars, and at Ds conferences.

The LuMind RDS runners’ program includes a community of champions for research who mobilize and inspire others to really make a difference in the Down syndrome community. In 2011, LuMind RDS launched the Any Race Any Place program, which allows runners to run locally with training and fundraising support from LuMind RDS and raise money for Down syndrome research. A runner may choose any local 5K, 10K, or marathon and LuMind RDS will assist them in obtaining an entry to the race, and also provide training and social media support. If the runner meets their fundraising goal for the race, then LuMind RDS will cover the registration fees. There are no other requirements, as LuMind RDS wants to make the process as easy and fun as possible. Runners receive fundraising and training tips as well as fun swag to celebrate their fundraising accomplishments along their journey. The funds raised by the runners of all ages and ability go directly to LuMind RDS to fund their research grants.

Lumind RDS Runners

Katie shared a story about an 11-year-old runner who has a sister with Down syndrome; he has run a local 10K twice and with assistance from LuMind RDS, he raised more than $600 each time! The Runners’ Program allows participants to be flexible in which races they want to run, while at the same time allowing them to give back to the Down syndrome community and make it a special experience.

While they have been supporting runners in all level of running events nationwide since 2011, they are branching out this year to host their own events. The Miles for Breakthroughs 5K will be held in Dallas in July; this is the first time LuMind RDS has coordinated their own race. They have designated the course and secured sponsors, and they are receiving great support from the local Down syndrome groups. In September, LuMind RDS will co-host the Rockin' Moms 5K, in conjunction with the Down Syndrome Diagnosis Network. This event will take place in Phoenix, at night, and will include glow sticks and music. Participants in both of these events can either run or walk, as the courses are closed and well contained, and there will not be a time limit for completion. Registration for these events is now open, and be sure to check out the amazing incentives for participants when you’re signing up on their event pages.

Katie said that the organization wants people to really understand where the money goes from these events, and how those funds are distributed. You can keep up with LuMind RDS on their Facebook, Twitter, and Instagram. To connect with Katie about partnering with LuMind RDS, runners should email the program at runfords@lumind.org.

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Walk Profile: Boardwalk Buddy Walk®

Author: Jen Franklin Kearns, ds-connex team member

Walk Profile: Boardwalk Buddy Walk®
Walk Date: Saturday, October 6, 2018
Location: Rehoboth Beach Boardwalk and Bandstand
Walk Registration Website: Boardwalk Buddy Walk® Website

On Saturday, October 6, the community of Rehoboth Beach, Delaware, will celebrate their 2018 Boardwalk Buddy Walk®. Rehoboth means “a place for all,” making the town of Rehoboth Beach a great place to hold an event which raises awareness and acceptance for those with Down syndrome.

Boardwalk Buddy Walk

Rehoboth Beach is a very family oriented beach town along the East Coast and this Buddy Walk® event has a very warm feeling. Centered around the bandstand in the heart of town, this walk is an uplifting and fun community gathering. Established in 2006 by Dennis and Sharonlee Diehl, the walk event was intended to promote acceptance and inclusion for individuals with Down syndrome in their community. Inspired by Sharonlee’s brother David, who has Down syndrome, they wanted to create an event that put community involvement at the center, to allow residents to become more comfortable including individuals with Down syndrome. The first year of the event, they had 13 buddies and around 350 participants. They have watched the event grow each year, and last year had 90 buddies and close to 2000 participants.

The success of the Boardwalk Buddy Walk® is credited to that warm feeling that participants experience at the event. “It’s that feeling that keeps bringing people back. We love being together,” explained the walk committee (which consists of Dennis and Sharonlee, along with Michelle Hetherington and Liz Evans). The two day event brings together a huge extended family, and people make a weekend out of it. They enjoy the Buddy Up party on Friday night, and the fellowship carries over into the Buddy Walk® the following day.

The walk committee hopes that participants get the message that their walk isn’t just about fundraising, but also about including those who are different from them. They want to put forth a message of acceptance, and this is what keeps bringing people back to their event, year after year. Their entire community gets involved with the event; the majority of the local businesses and eateries display welcome banners, and they offer discounts and prizes to participants. Because their event is out in the open, it’s very obvious to all visitors that something special is happening that weekend. There is a very festive vibe to their event, which is clear to see when everyone starts dancing together on the bandstand. “People just dance with whomever is next to them,” the committee explained. “No one has their guard up, they hold each other’s hands and dance!” One participant posted on Facebook that “this is the coolest club I’ve ever been in,” and they want everyone to feel that way.

The committee also hopes that new families are pleasantly surprised when they attend the walk for the first time. They want them to feel that acceptance right away; they want them to know that the community is already there to support them. They want the message to be that “you’re not alone in this; we have a great community to help you.”

Boardwalk BW Best Buddies

There have been many memorable moments at the Boardwalk Buddy Walk®. From celebrity guest Chris Burke’s attendance, to a self-advocate’s annual rendition of Frank Sinatra’s “My Way,” to NDSS President Sara Hart Weir’s presence to honor them as Buddy Walk® of the Year in 2016, Buddy Fest Weekend is always a remarkable event.

The Rehoboth Beach community is very generous, and because of that generosity, the Boardwalk Buddy Walk® committee is able to donate to several local organizations with the proceeds of their event. They support their local families, Special Olympics, the Salvation Army, Best Buddies, and local programming from KSI and Chimes. Although over $80,000 was raised last year, as a result of their year-long fundraising efforts, the committee stressed that it’s “never really been about the money, but about the awareness.” They just want the community to get involved, they want everyone to know they are welcome, and they want everyone to just go and see what it’s all about.

We look forward to watching this event as it continues to grow! To show your support for the 2018 Boardwalk Buddy Walk®, please visit their fundraising site at http://www.ds-stride.org/boardwalkbuddywalk.

This post is a continuation of our Down Syndrome Walk Profile series. We’ll be profiling and highlighting Down Syndrome Walks from around the country in an effort to share the stories and experiences that make Down syndrome communities so vibrant and unique. Check back for future posts in this series coming soon.