Connexions Blog

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Welcoming a Celebrity Guest to Your Down Syndrome Fundraising Event

Author: Jen Franklin Kearns, ds-connex team member

While all of the ds-connex partners have the same objective (to raise awareness and funding in their communities to support their missions), each Down syndrome fundraising event is unique. They may share the same basic elements, but there are always details that make the events different. A trend that we noticed during the 2017 walk season was the presence of celebrity guests. Several of the ds-connex partners invited cast members from A&E's Born This Way to attend their walk events, and another partner invited The Imagination Movers to their event. We were excited to learn more about our partners’ experiences, and hope their insight will serve to inspire others to extend an invitation to a celebrity guest.

CDSS Celebrity Guest

Held in September 2017, the Chattanooga Buddy Walk® invited The Imagination Movers to perform at their walk. Event coordinator Latricia Milburn said the Chattanooga Down Syndrome Society wanted to “step up the entertainment at our walk,” and they “decided to look for a band that would attract both children, young adults, and those who may not have a personal connection to the Down syndrome community.” With fans all around the world, the Imagination Movers were certainly a good choice! Additionally, the event coordinators for the Nashville Buddy Walk® recommended the band because they hosted the Imagination Movers several years ago and their audience “had a blast!” Having these celebrity guests at their walk increased awareness of the event, as the CDSS believes that the presence of the Imagination Movers brought in people who may not have otherwise participated in their walk. They also noticed that leading up to the walk, there was an increase in engagement on their social media platforms when they specifically mentioned the Imagination Movers. While there was additional planning involved in having celebrity guests at their event, it was well worth it. Latricia explained that “the Movers were so gracious to work with! We set up two adults with Down syndrome to be their ‘handlers’ for the day. We wanted them to really experience what an adult with Down syndrome is capable of. By the end of the day, they had made a strong connection and even invited those new friends with Down syndrome to introduce them on stage!” She went on to share that “seeing the Imagination Movers walk through our crowd of participants, both with Down syndrome and without, was amazing! They were so interactive with the kids and everyone had a great time!”

RGDSA Celebrity Guest

On Saturday, October 28th, the Rio Grande Valley Down Syndrome Association held their annual Step Up for Down Syndrome Awareness Walk, and because they were celebrating their fifth walk, they decided that they wanted to “do something BIG.” They invited Megan Bomgaars of A&E’s award-winning series, Born This Way, as their Grand Marshal. The event coordinators love Megan’s speech, “Don’t Limit Me,” and they decided that the theme of their walk would be “Don’t Limit Us.” In early October, Megan filmed a promo for the event, which was posted on the RGVDSA Facebook page, and it was viewed almost 9,000 times. What a terrific way to build awareness in their community for the event! This video post also served as a reminder for people to register before the deadline to receive a t-shirt. The event coordinators really took advantage of this post’s potential to reach a large number of participants in their community to deliver an important registration reminder. In addition to the video promo, Megan agreed to participate in a Q&A session the night before the walk. This was important to the walk committee because they wanted their organization’s members to have the opportunity to spend time with Megan. The event was free of charge to the RGVDSA members, and gave them the opportunity to hear Megan speak and answer their questions away from the noise and excitement of the walk event. However, RGVDSA also invited the public to hear their celebrity guest speak, and charged them $10 to attend the private event. These are great examples of the impact having a celebrity guest could make on your event, and a creative way to partner with your guest to build awareness and excitement around the event. You can watch Megan's speech at the RGVDSA Step Up for Down Syndrome Awareness Walk here.

In November 2017, the SANDS Tucson Buddy Walk® hosted Rachel Osterbach, of A&E’s Born This Way, as their Grand Marshal. Chelsea Hansen, Tucson Buddy Walk® co-chair, explained that “inviting a celebrity guest has been discussed at length for the past several years. We were frequently held back by the cost, and simply not knowing where to even begin with the process. Once we saw the Phoenix walk hosting a cast member for our Board’s favorite show, we were able to reach out to them to gather more information, and then make a more informed decision about bringing out a celebrity. At that point, we took a board vote and approved it!” Being big fans of Born This Way, and knowing that this is Rachel’s “Year of Yes,” they decided to extend an invitation to Rachel. Although it required a lot more work for the walk committee (in terms of arranging flights, hotel accommodations, food, and itinerary), Chelsea shared that “the time spent talking with Rachel’s parents as well as Rachel herself was very inspiring and an experience I will never forget. Also, watching people’s faces light up with joy, and the squeals of excitement when they saw Rachel was enough to make my heart swell with happiness.” Chelsea stressed that while it was an amazing experience, she wasn’t prepared for the extra amount of work required to host a celebrity. She recommends having one person on the event committee dedicated to handling all of the additional responsibilities, as these are aspects that cannot be neglected. All of the hard work paid off, though, as Chelsea shared that “our members loved having Rachel. The excitement on their faces when they saw her was just amazing to see! She was always talking to people, or dancing with them. She and her family were so easy to work with and just a complete joy to have with us!”

Tucson Celebrity Guest

The 2017 Atlanta Buddy Walk® was scheduled to take place on October 8, 2017, but had to be cancelled due to the threat of a hurricane. The Down Syndrome Association of Atlanta had looked forward to hosting Sean McElwee as their celebrity guest this year, and they were very disappointed that the weather kept them from doing so. Because there were additional travel costs to rebook his appearance, the DSAA decided to alter the weekend’s agenda so that they could still enjoy Sean’s company. The DSAA board was able to host Sean for lunch and a trip to the local aquarium, and they were also able to coordinate a small gathering with 10-15 families. DSAA Executive Director Sheryl Arno was grateful to Sean and his family for their flexibility due to the unfortunate weather-related change of plans, but she would advise other organizations to remember that there may be additional costs to rebook at a later date.

Hosting a celebrity guest at a fundraising event certainly adds cost and time to your planning efforts, but the benefit of their presence can outweigh those additional obligations. Not only can you raise more awareness of your event in your community, which can lead to increased donations, but you can also enhance your participants’ experiences as they interact with your guests. From what we can tell, these experiences are well worth the extra commitments.

Event Coordinators – If you enjoyed this post, please check out the rest of our Event Coordinator Tip series. We feature event tips from around the country in an effort to share ideas and help build our Down syndrome community.


Walk Profile: Down Syndrome Association of Delaware Buddy Walk®

Author: Jen Franklin Kearns, ds-connex team member

Walk Profile: 15th Annual DSA of Delaware Buddy Walk®
Walk Date: Saturday, May 19th, 2018
Who: Down Syndrome Association of Delaware
Location: Silver Lake Park, Middleton, DE
Walk Registration Website: http://http://www.ds-stride.org/delawarebuddywalk
Organization Website: http://dsadelaware.org DSA DE Buddy Walk Jacobs Dream Team

On Saturday, May 19th, the Down Syndrome Association of Delaware will celebrate their 15th annual Buddy Walk® at Silver Lake Park in Middletown, Delaware. A family event that also brings awareness to the community, the DSA of Delaware Buddy Walk® has fun for everyone, including games, crafts, dancing, raffles, and a silent auction. The event is not only for the Down syndrome community, but for the community at large to attend. Lauren Camp, the organization’s executive director, shared that “there is a common misconception that you have to be connected to the Down syndrome community to attend.” Rather, the DSA of Delaware hopes that everyone in the community will attend their annual celebration.

Lauren came to the DSA of Delaware as a volunteer when she was a high school student, because a teacher (and mother of an adult daughter with Down syndrome) recommended the organization. Lauren volunteered for many years, and when she was finishing up her undergrad degree, she became the part time program director. After Lauren received her master’s degree, she became the Executive Director of the DSA of Delaware. In all, she has served the organization for almost 10 years, both as volunteer and employee. One of her first accomplishments occurred when she was senior in high school; she started a summer camp program for kids and now 100 campers participate annually. The program recently expanded in Delaware because of its popularity. Lauren will be presenting at the 2018 DSAIA Leadership Conference about the camp so that other organizations can learn how to start a similar program. Lauren started working with the National Down Syndrome Congress as the Kids’ Camp Director eight years ago, and now she serves on the policy team for NDSC as well.

This year marks the walk event’s 15th year, so the DSA of Delaware will be celebrating this milestone! The walk has seen some changes throughout its 15 years. The first 14 walks were held at the same location, and for 13 years the walk was run by Coleen Popp, a dedicated volunteer to the organization. Lauren expressed her gratitude to the Popp family for their years of dedication to the event. Kimberly Finn Curran now serves as the co-chair for the Buddy Walk® Committee and has brought a lot of organization, energy, and best practices to the event. Lauren has loved working with Kimberly and the rest of the dedicated Buddy Walk® committee. Last year, the committee focused on successfully executing a walk event without their seasoned leader, and once they saw that they could do it on their own, they made the decision to move to a new location. This move has enabled the committee to secure strong corporate sponsorships, so the committee is already seeing the positive aspects of changing their location. For the first couple of years, their Buddy Walk® events were small, but they continue to add more elements to the event (a resource area, kids’ play area, crafts) and the walk has grown each year.

DSA DE Buddy Walk super hero While some aspects of the walk have changed, several have been consistent over the last 14 years. The organization has always encouraged families to form teams honoring their loved one with Down syndrome, and the walk itself has always been the keystone of the event. The DSA of Delaware also sets up a tent each year, to provide information to their membership’s families and to welcome new families to the event. Members look forward to the spirit of the event (in that everyone is happy to be there, enjoying themselves), as well as spending time with friends and family who they may only see at the Buddy Walk® each year.

When families attend the DSA of Delaware Buddy Walk®, they realize how many families are truly served. “The walk is one of the events that everyone attends,” Lauren explained. “People realize how many families in Delaware are touched by our organization, and they are reminded they aren’t alone.” Those who attend the walk may only know one person with Down syndrome, but they see how many individuals there really are. “It’s great for new parents to meet all the other families in attendance.”

The DSA of Delaware works with the Down syndrome clinic at the local children’s hospital, and they gage the interest of new parents and parents new to Delaware in terms of participating at the walk. Often, their personalities can determine how they handle the diagnosis and how engaged they will be at their first walk. New parents are encouraged to attend the walk and at least observe if they aren’t quite comfortable jumping in right away as fundraisers. Some families have huge teams, and others choose to simply attend as a family – either is welcomed! The DSA pairs them with a Buddy Walk® mentee, so that they have someone to hang out with on that day, and get ideas on what to do the next year and how they can prepare. The new families are also greeted by the DSA staff or board members upon their arrival to the walk.

DSA DE Buddy Walk Laura Team

So many memories are made each year at Down syndrome walk events, but Lauren’s favorite memory is from last year, when two of their self-advocates led the opening ceremonies and acted as the event’s emcees that day. They started the walk, made introductions, and were the faces of the event. “It was a great experience, and we are definitely doing that again,” Lauren shared. How great for new families to see self-advocates in this role!

The DSA of Delaware Buddy Walk® is the organization’s biggest fundraiser. The funds raised allow the organization to serve their Down syndrome community with programming, events, new parent groups, outreach initiatives, and educational support. Everyone in the community is welcome to attend this fun family event! The DSA hopes to spread the word that families do not need to have any ties to the Down syndrome community to attend the walk and enjoy all the activities.

To show your support for the Down Syndrome Association of Delaware and their 2018 Buddy Walk®, please visit their fundraising site at http://www.ds-stride.org/delawarebuddywalk. To learn more about the DSA of DE, please visit http://dsadelaware.org.

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.


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.