pALS Newsletter - Summer 2023 |
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This newsletter is packed with exciting news - including a newly announced partnership, ways to stay prepared during a hurricane or in the event of a power outage, community news, and much more!
We want to see your summertime photos! Are you traveling, watching baseball games, spending time with your loved ones? Email Kacie.Banegas@TeamGleason.org so we can share on Instagram!
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Kristi joined our team in July 2022 as our CRM and Development Associate. While she has become an integral part of our Development Team, we fondly refer to her as our “Swiss army knife!” From events to spreadsheets and even keeping our office plants alive, she is willing and able to do it all!
Two things we didn’t know went together before she joined our team? The band Tool and Microsoft Excel. You can find her rocking out in her office while she runs the numbers.
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Take Me Out to the Ballgame
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Each year, Team Gleason proudly observes Lou Gehrig Day, held annually on June 2nd. This honorary day marks when Gehrig became the starting first baseman for the New York Yankees. It is also remembered as the day he lost his battle with ALS.
Team Gleason was excited to once again join the Chicago Cubs at Wrigley Field to celebrate those living with ALS, remember those we have lost, and to raise awareness for ALS. On June 15th, during the Chicago Cubs vs. Pirates game, the ALS community sang “Take Me Out to the Ballgame” on the jumbotron during the 7th Inning Stretch!
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On July 7th, we celebrated our pALS Summer Luncheon at the Team Gleason office! Thank you to everyone who was able to attend! We had a blast seeing everyone and spending some quality time with our friends around the community!
Special thanks to Main Squeeze Juice Co. Veterans Blvd and Zuppardos Economical Super Market for catering our event!
If you are in driving distance of New Orleans and want to attend future events, please email Jamie Clark.
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“I see a world where we keep exploring how to serve others, how to care for them, and how to love our human family.” - Steve Gleason
We honor the incredible ALS community that inspires us to learn and grow every day. We have learned a lot over the last eleven and a half years. ALS is not a one size fits all disease. Every individual and family are unique. We consider ourselves fortunate to have found partners who share our commitment to empowering individuals with ALS to maintain independence at home, navigate the world with functionality, and cherish their loved ones.
Over the past few months, we’ve been working with iRobot and Fairshare to innovate toward more thoughtful technology for the home. We’re excited to share the beginning of our journey to get there. As we envision the future, we see a world that shines brighter than our past. Together, let's continue exploring ways to serve others, care for one another, and embrace our human family.
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Tobii Dynavox and Team Gleason Partnership News
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We’re proud to continue our relationship with Tobii Dynavox to support individuals with ALS to increase access to communication aids.
“With a rapidly progressive disease such as ALS, where one’s speech is impacted, timeliness in accessing Alternative Augmentative Communication tools is critical. This collaboration brings together the expertise and resources of both organizations built on a long-standing track record of delivering robust products and services to the ALS community.” said Blair Casey, Executive Director at Team Gleason.
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Hurricane Preparedness Guide
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Hurricane season lasts from June 1st through November 30th.
Hurricanes are strong storms that cause life and property threatening hazards such as flooding, storm surge, high winds and tornadoes. Preparation is the best protection against the dangers of a hurricane.
We know living with ALS adds more stress and the need for extra preparation during Hurricane Season.
We urge you to have your plan ready – and we’ve put together some resources to assist you.
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Download the Team Gleason Wheelchair Guide for PRO TIPS by Numotion
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The Team Gleason Power Wheelchair Guide is focused on providing individuals living with ALS the information needed to feel empowered to advocate for themselves during the wheelchair evaluation and beyond.
Pro Tips from the professionals at Numotion, Team Gleason's Preferred CRT Provider, can be found throughout this guide to assist those at any stage of mobility.
This guide will help an individual find the wheelchair that fits their unique needs and desires.
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Steven's Dip in the Ocean |
Taking a quick dip in the ocean seems like a simple task. You just walk down to the water, walk in, and then walk out. However, when you have ALS, or another physical disability, it can take a village to make it happen.
Steven Stepien was diagnosed with ALS in in 2021. He was able to work with death doula and put together a list of what he wanted to do. Getting into the ocean made that list. His friends and family were not going to settle for just getting his feet wet. His wife Sarah led the charge on getting him floating off the coast in Malibu.
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Our Team Gleason Adventure was amazing. Though we go to Jazz Fest every year, this year Team Gleason gifted us with an enhanced experience, giving us access to multiple days and special perks.
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| Valerie's Golf Adventure
in Colorado Springs
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Valerie originally applied for a quiet golf Adventure with her husband at the Broadmoor in Colorado Springs. In a wonderful last-minute change, her son was granted leave from the military. Of course, we were game to help make it a family Adventure.
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Stay In Touch With Team Gleason
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Join our next Team Gleason Virtual Zoom Gathering for both those living with ALS and their caregivers. We are inviting everyone - no matter where you live! First Thursday of Every Month at 12pm CST.
Need Additional Support? *Please note, meetings below are now held on the second week of each month.
Second Wednesday of Each Month* | 8pm CST: A gathering focused on adult children of persons living with ALS
Second Thursday of Each Month* | 1pm CST: A gathering focused on caregivers of those living with ALS
We hope you can join us! If you would like to be invited to participate, please email kelly@teamgleason.org.
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| CHOOSE TO REUSE! To return or donate equipment please contact returns@teamgleason.org so we can best assist with the logistics of the return or donation.
If we are able to accept the donation then Team Gleason will email prepaid shipping labels for the boxes.
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