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pALS Newsletter - January 2022
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We are excited to share our latest newsletter filled with information, tips, and stories. Part of our mission at Team Gleason is to be a resource and connect with pALS and cALS around the country.
Happy New Year! As we reflect on this past year, we wanted to say thank you to the ALS community. Together, we have accomplished some amazing things in 2021, from celebrating our 10th anniversary to witnessing important legislation being passed! We look forward to another exciting year ahead of us with you by our side.
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Staff Highlight: Kacie Banegas
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| Steve once said, “through adversity we find our heroes," and our very own Content Development Associate, Kacie Banegas, is a living example of that statement. Kacie is a Type One Diabetic, who, like the ALS community we help, is empowered through the use of technology. In Kacie’s life, technology balances her insulin, so she knows all too well how the power of technology can give back some of what diseases take away.
Kacie is the consummate “message-bringer.” She uses her natural writing abilities to share inspiring stories about the ALS community and the work Team Gleason does as community partners. Kacie was born and raised in New Orleans and we are glad she calls Team Gleason home.
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pALS Testimonial: Randy M.
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Thank you very much for all you have done for Randy. He received his power wheelchair through NuMotion about two weeks ago and it has allowed him much freedom and greater independence in mobility.
Having access to the neighborhood and the community brings a smile to his face. Randy can be found enjoying the fresh air, basking in the sun, and visiting with neighbors at least a couple hours each day, thanks to his power wheelchair.
The ease of transfers with the seat elevator, as generously funded by Team Gleason, makes life so much easier. We appreciate everything you have done.
-Israel M., Son/Caregiver Talent, OR
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President Biden Signs "Act for ALS"
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On December 23rd, 2021, President Biden signed into law the "Accelerating Access to Critical Therapies for ALS Act.” This bill establishes grant programs to address neurodegenerative diseases, such as ALS, and contains other related provisions.
This is a huge win for the ALS community. Thank you to everyone who made this happen!
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Team Gleason and Comcast Partner to Revolutionize TV Control and More for People
with Physical and Speech Disabilities
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The partnership will fuel the innovation, development and distribution of accessible products and experiences for people with physical and speech disabilities such as ALS, beginning with the Xfinity Adaptive Remote
PHILADELPHIA, PA and NEW ORLEANS, LA – January 19, 2022 – Comcast and Team Gleason have partnered to drive inclusive innovation to improve the independence and quality of life for people with physical and speech disabilities, including those living with ALS. Together, Comcast and Team Gleason are actively engaging with people with ALS (pALS) and caregivers, as well as preeminent clinicians, technologists and assistive technology partners to define and develop accessible, empowering experiences – from TV control to smart home solutions and beyond.
The companies are proud to announce their partnership’s first collaboration, working together on the latest evolution of Comcast’s Xfinity Adaptive Remote. The Adaptive Remote, first launched in 2019, is an award-winning web-based remote control for Xfinity X1 and Xfinity Flex– which gives customers unprecedented control of their in-home entertainment experience. The Adaptive Remote works on any computer, smartphone or tablet by seamlessly connecting with the assistive devices that people with disabilities use and trust, including eye tracking technology, sip and puff technology, switch control technology, voice control software and more.
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Spread Some LOVE this Valentine's Day
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Valentine's Day is just around the corner! We know there's no better gift than spending quality time together. We've compiled a list of additional gift ideas that you can give your loved ones!
Audiobook Subscription: Get your loved ones an Audible subscription, so they can listen to their favorite books and podcasts whenever they want! Click Here to Download the Audible App.
Kindle Book Subscription: If your loved ones prefer reading a book over listening to an audiobook, you can gift them with a kindle subscription. Click Here to download the Kindle App.
Personalized Photo Books: Having a physical photo book that you can flip through together and keep handy is also a great way to share your story through pictures. Many websites will make the book for you; all you have to do is upload the pictures you want! (Some website that you can use to make a Photobook or other prints: Social Prints, Shutterfly, Mixbook)
Storyworth: Storyworth is a great tool to help share your loved ones’ stories! Storyworth will allow you to discover family stories that you may not have known before! Storyworth will email a question/ prompt to your loved one once a week and share the answer with you. At the end of the year, all the stories will be compiled into a beautiful keepsake book. Click Here if you’re interested to learn more.
Digital Picture Frame: Since seeing loved ones isn’t that easy right now, a high-tech, digital picture frame is an easy way to keep in touch. Here is a list of some of the best digital picture frames that are currently available. They range in prices and also capability. Some of them allow you to change up the pictures and upload new ones remotely!
Build-a-Bear: Only with Build-A-Bear Workshop can you make a teddy bear with voice recordings that will create a memorable, magical surprise. Under the Accessories section, you can record a special message on a sound chip to make any stuffed animal a unique and personalized gift! Click here to build a bear.
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| Free Postable Cards
for pALS
Thanks to our friend and fellow ALS patient, Dave, we were introduced to Postable. Postable is an online company that makes sending stylish snail mail as easy as sending an email. You select a card design, type out your message, and they handle the printing, stuffing, stamping, and mailing. Dave uses his Tobii Dynavox I-12+ to write and mail greeting cards to friends and family across the country using only eye-gaze.
Postable recognizes the value of meaningful connection, which is why they are offering our ALS patients a chance to send a card through their website for free! It's simple. Just follow the steps below.
Step 1: Visit the Postable website and select a card you would like to send here.
Step 2: Type out your message and the mailing address you'd like to send to.
Step 3: Use code GLEASON at check out (one free card per person).
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Virtual Zoom Gatherings
Join our next Team Gleason Virtual Zoom Gathering for both those living with ALS and their caregivers.
We are inviting anyone - no matter where you live! First Thursday of
Every Month at 12pm CST.
Need Additional Support?
First Wednesday of Each Month | 8pm CST: A gathering focused on adult children of persons living with ALS
First Thursday of Each Month | 1pm CST: A gathering focused on wives of men living with ALS
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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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| | We are your support team.
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We want to hear all about you! Over the past 11 years, we've met thousands of people living with ALS who have amazing talents such as quilting, cooking, making art, and even training miniature horses. Do you have a specific hobby or talent that you enjoy? Does technology, such as a powered wheelchair or speech generating device, assist in your hobby in any way? We'd like to hear all about it so we can share your story to inspire and educate those around the world.
If you'd like to share about your hobby, or any other story about your ALS journey, please click here to share your story, photos, and videos.
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| Do other family and friends want to receive the pALS Team Gleason newsletter?
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