|
|
pALS Newsletter - Winter 2021
| |
We are excited to share our Winter 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.
We are not only inspired by our founders, Steve Gleason and his wife Michel, but our team continues to be inspired by others living with ALS.
If you'd like to share a story about your experience with Team Gleason or how we have supported you in your ALS journey, please email pals@teamgleason.org.
| |
 | Emily Kornman
Speech-Language Pathologist
|
| I am one of the Team Gleason members lucky enough to work with wonderful people living with ALS every day. I have been passionate about finding ways for individuals with communication challenges to communicate since I began working with Augmentative and Alternative Communication about 8 years ago. Each day I am inspired more and more by the resilience and strength of this community. This world is truly a better place because of each of you; but it’s time for the world and tech industry to catch up to the needs of you all. That is what drives my passion each day; trying to find ways to make this world, this technology industry, more inclusive and accessible.
When I am not advocating for the ALS population, I am likely talking about how adorable my dogs are. I’m an avid dog lover, and I enjoy being active and in nature. I equally enjoy binging tv shows or podcasts. I am always excited by challenges because they lead to new opportunities. Like the challenge of getting married in 2020... in a pandemic... but I did it! 2020 also allowed for pushing many boundaries (including sea and air). I took this time to learn how to really socially distance by becoming a certified scuba diver in 2020.
Facing challenges head-on is what inspired me to join Team Gleason because no one should be told, “this won’t work for you, you can’t communicate.” This upcoming year, we will continue learning more from you all and share this knowledge and experience across the country to help pALS everywhere. My other goal for 2021 is to make the Team Gleason workplace dog friendly ;).
| |
|
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! TODAY, February 4th at 12pm CST.
| |
pALS Testimonial: Kathy S.
I wanted to write and let you know the new chair arrived on Tuesday and IT IS FANTASTIC!!!
Of course, it has all the features that make life easier, but I had no idea just how having the elevator option would make life easier and so much better. In fact, even on the day of delivery when Scott from Ability was showing me all the bells & whistles, when I raised that chair and was able to see the 3 people standing around me eye-to-eye, I actually started crying. I totally wasn't expecting that reaction. Seeing people on their level rather than having people standing around talking is huge. Especially since everyone is wearing a mask, we now must rely totally on that eye contact for "connecting". I see this chair (especially with the elevator feature) will truly impact the quality of life for me. I actually can reach the microwave!!!
I can't say enough good things about Team Gleason. It is filling a big gap in the ALS community. Website/communication/everything has been exemplary.
Once again, thank you Team Gleason!!
Kathy S., Florida
| |
Spread Some LOVE
Valentine's Day is around the corner! Though we know and believe that there is no better gift than quality time, we’ve compiled a list of other 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!
Now, I know that this is a newsletter for pALS, and most of the gift ideas I mentioned above are mostly gifts that any caregivers can give to their pALS. However, we have come up with a few gift ideas that pALS can easily give to their loved ones!
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. Record a special message on a sound chip to make any stuffed animal a unique and personalized gift! Click Here to build a bear.
Send a Postable Card: Keep reading below.
| |
Free Postable 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).
| |
Listen to Steve's Top 10 Spotify Playlist
| |
Participate in Google's Project Euphonia
For millions of people around the world who are living with dysarthria, face-to-face communication can be very challenging. Using voice-activated technology can be frustrating as well. Project Euphonia, a Google Research project, is focused on improving how such systems recognize impaired speech.
Google needs to collect samples of impaired speech.
Now is your chance to make an impact and help ensure that future individuals can maintain independence through voice-activated technologies. Qualified participants will receive a $300 Visa Gift Card from Google.
| |
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.
| |
ICYMI
Here are two videos we recenlty used for fundraising tools to help tell our story and how we are helping the ALS community so we can continue providing assistance.
| |
|  |
Team Gleason Provides Access to Technology
| |  |
Randy and Tina's Team Gleason Sailing Adventure
| |
| | |
|
| We are your support team.
| |
Do other family and friends want to receive the pALS Team Gleason newsletter?
| |
|
|
|
|
