pALS Newsletter - Spring 2024 |
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We hope you're having a great start to your year!
We have some fun opportunities to get involved with Team Gleason and in the ALS community - read below to find out how you can get involved!
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"I can’t thank Team Gleason enough for installing the elevator on my wheelchair. Their prompt response and all communication with me was very professional. The elevator is amazing. It has enabled me to continue living independently in my home. My favorite place to go is out to the barn to ride horses. The elevator allows me to be at eye level with the horse making it easier, and more enjoyable, when grooming and spoiling them with lots of attention. I will be forever grateful for the assistance I received; it has been life-changing for me. Team Gleason have been instrumental in allowing me to enjoy my life as much as I can for as long as I can."
- Julie I., Spring, TX
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We love hearing about how the seat elevator provided by Team Gleason has positively impacted Julie's day-to-day! We want to see your springtime activities and learn how our program services are assisting our community. Please send any photos or videos to kacie.banegas@teamgleason.org so we can share!
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With a background in technology, and a passion for helping people, Jamaal is ecstatic to be a part of Team Gleason as a Technology and Equipment Associate. Jamaal was introduced to Team Gleason by his sister, who had previously worked alongside Team Gleason pALS.
After hearing Steve’s story and learning more of what the organization provides for people living with ALS, he was immediately inspired to join the team. Jamaal loves to help people identify the assistive technology that best suits their lifestyle. As a native New Orleanian, Jamaal enjoys cheering on the New Orleans Saints, traveling, hanging out with family and friends, and trying new restaurants.
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Community Spotlight - Meet the Kotiya Family!
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Meet Siobhan Pandya and her sons Ronan (age 13) and Keaton (age 11) - an inspirational family growing their husband & father’s legacy by focusing on what they can do today to help other families living with ALS, including raising awareness around the power of a healthy and positive mindset.
In his podcast, Mindset Matters, 13-year-old Ronan navigates through grief, celebrates his father, Rupesh Kotiya, and advocates for a world free of ALS.
After listening to Ronan’s podcast, Steve Gleason remarked, "Training our minds is the most important investment we can make in our lifetimes. Siobhan, Ronan, and Keaton are executing the same bravery and resilience their father showed us, and we are all inspired by it.”
Team Gleason's Director of Development, Katherine O’Hagan, recently attended the Rupesh Kotiya Legacy Celebration on March 2, 2024, in Plano, Texas, and shares her thoughts in a blog post.
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Caregiver Day at Louisiana State Capitol
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Above: Caregivers Frank, Diane, and Elaine attend speaker sessions at the Louisiana State Capitol.
Left: Frank and Diane meet with Senator Rick Edmonds
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Care Services Coordinator Kelly Viator recently represented Team Gleason in joining AARP as members of the Live at Home Louisiana Coalition to visit the state Capitol for Caregivers Day. Caregivers Frank, Diane, and Elaine attended alongside Kelly, meeting with members of both the House and Senate.
The group learned from guest speakers from both Louisiana Department of Health, Office of Aging and Adult Services (LDH OAAS) and Public Affairs Research Council (PAR).
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Team Gleason featured during
Microsoft Ability Summit
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Microsoft's Ability Summit 2024 highlighted advancements in accessibility through AI technology and innovation. Access to Assistive Technology can help empower people with ALS and other speech disabilities to reclaim their voice to communicate.
Watch this inspiring video of how Microsoft partnered with Team Gleason to help Brian Jeansonne bring more of his personality into everyday conversations.
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Celebrating World Voice Day
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As part of our celebration of World Voice Day on April 16th, Team Gleason highlighted the importance of Voice Preservation. Team Gleason Access and Innovation Committee member, Shawn, was diagnosed with ALS in 2014 and did not bank his voice before ALS took away his ability to speak. He uses a speech generating device to communicate, but it has been a stranger’s voice speaking - until now.
As part of the ongoing project that was recently announced at the Microsoft Ability Summit, Team Gleason was able to help Shawn sound like himself again. We received this message as a thank you.
This project will launch later this year, but in the meantime, there are multiple options for preserving one’s voice. We encourage you to read about Voice Banking, BCH Message Banking™ Protocol, or ‘Double Dipping’ on our website: https://teamgleason.org/pals-resource/voice-message-banking/
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Share Your Voice with the
Speech Accessibility Project |
Now recruiting individuals with ALS to help speech recognition tools understand diverse voices.
The University of Illinois Urbana-Champaign will safeguard your personal information as a part of this project funded by Amazon, Apple, Google, Meta, and Microsoft.
Record your speech from the comfort of your home. Mentors from Team Gleason are ready to help you through the participation process.
Participants will be compensated - Participants can earn up to $180. Caregivers can earn up to $90.
For eligibility criteria and registration, click here.
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May is ALS Awareness Month - Share Your Story
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May is ALS Awareness Month, and Team Gleason is inviting you to take part! Throughout the month, we aim to raise awareness of ALS and its symptoms, while also taking the time to celebrate our amazing community, caregivers, and families.
Whichever role you play in this journey, we'd love for your story to be a part of what we share during ALS Awareness Month. Please email kacie.banegas@teamgleason.org for an opportunity to be featured.
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Thank you to our
CCC Charity team! |
Our 9th Crescent City Classic was a huge success! With support both locally and virtually, Team Gleason went into this year's 10k with a total of 125 runners. Among the runners were two amazing Team Gleason pALS - Ursula from Lafayette, Louisiana and Benson from Hattiesburg, Mississippi. We would like to extend a heartfelt thank you to all of our charity fundraisers, sponsors and vendors who participated in helping make this event so special!
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Fin, Feather, Fur Food Festival in Lafayette
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The 3rd Annual Fin Feather Fur Food Festival benefiting Team Gleason Foundation will take place in Lafayette, LA on April 25th. F5 is a cooking competition where teams compete for Winner Status in the Fin, Feather, and Fur or Dessert division.
We're excited to offer free admission to pALS plus 2 guests. Please email for pALS tickets – katherine.ohagan@teamgleason.org
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Download the Team Gleason
Power Wheelchair Guide
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Have you seen our Wheelchair Guide powered by Numotion?
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.
This guide will help an individual find the wheelchair that fits their unique needs and desires.
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Do you have Medicare and/or Medicaid and use a mobility device? A group of advocates including the Colorado Cross Disability Coalition and Disability Rights Education and Defense Fund are collecting stories from wheelchair users who've needed to get their equipment repaired.
Please share your stories through the following online survey*. Responses will be shared with the Centers for Medicare and Medicaid Services (CMS) Ombudsperson.
*You only need to complete this survey if you have Medicare and/or Medicaid and if your wheelchair or scooter has needed a repair in the last three years. Team Gleason is not affiliated with this survey or data collection. If you have any questions or have issues accessing this form, please contact Mary Lou Breslin (mlbreslin@dredf.org).
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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
Members living in Louisiana and Mississippi can also email Kelly (below) for information on an additional meeting group.
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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