Connexions Blog

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



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.

.


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.


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 on June 10th. The Facebook album will be posted June 11th in the afternoon, 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 10th. We will happily include entries submitted after 6/10 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.