With the funds donated to the Gleason Initiative Foundation, Team Gleason was able to provide Roxanne Green with a Tobii Eye Gaze System.
“First of all, I want to thank The Steve Gleason Foundation and Steve Gleason and his family for my Tobii. I want you to know how important it is to me and my family. It has helped me to communicate with the outside world in so many ways. My boys get so excited when they hear me talk with the Tobii, they laugh and laugh and always want me to say their names. My family and I are believing for a healing or cure everyday.” – Roxanne Green
Roxanne is a mother of 4 boys. She says her sons make getting out of bed worth it everyday. With the help of her communication device, Roxanne remains an active and vital part of her children’s lives. She can communicate with teachers through email and text as well as check on homework, projects and grades again.
The Breath’s Anniversary Surprise – A Team Gleason Adventure full of wonderful memories…
What a day and what a surprise! This year Chuck and Ellen Breath celebrated 47 years of marriage. Little did they know on Valentines Day they were going to spend the day surrounded by many friends and family at one of their favorite locations, The Grand Hotel at Point Clear, Alabama.
Chuck was diagnosed with ALS a little over three years ago. Ellen is his wonderful caregiver who tirelessly makes sure he has all the care he needs with much love and support. Team Gleason has been an invaluable source of knowledge, compassion and support during Chuck’s fight against ALS.
Team Gleason and the family wanted to do something special for them, but what? This is where the idea for a destination celebration started. Everyone involved in the planning wanted it to be a surprise, but that was easier said than done.
Chuck and Ellen’s daughter, Missy , started contacting family members and long time friends to save the date. Everyone was excited and looking forward to it.
As the date got closer, the secret was getting harder to keep. They knew something was up, but couldn’t quite figure it out. When the weekend finally arrived they were very excited.
That morning Ellen and Chuck were ready for the “small” family brunch and made their way to the main event room. Along the way there started seeing friends of theirs that were waiting for them to arrive. At first they thought it was just a coincidence, but then realize that it was going to be a get together of many friends and family.
When they entered the ballroom, they were greeted and cheered by a LARGE group of friends and family! The ambiance was spectacular with great food, a great jazz band, beautiful decorations and a great water view. The room had been decorated with a nautical theme in honor of Chuck’s love to boating and to coincide his theme “Sink ALS”.
During the brunch many memories were shared and toasts made in honor of Chuck and Ellen.
Chuck and Ellen were genuinely surprised and enjoyed spending the special occasion with everyone. The joy and the happiness that this event brought to them could not be missed.
Many thanks to Team Gleason, Mr. Paul Varisco, Suzanne Alford, and Liz Chapaton for making this event SO special and providing such a memorable time for all involved! And a special thanks, to our beacon of hope, Steve and Michel for leading all the pAlS in the fight against ALS.
A big thank you to Ryan Griffin for his support of Team Gleason and the ALS community! Griffin, former New Orleans Saints back up QB, continues to support Team Gleason in Tampa while serving as the veteran QB for the Buccaneers. Last night, Griffin spent some time in Tampa with New Orleans native Marvin Smith watching Monday Night Football. Both Martin and Ryan attended Tulane University. Marvin was unable to attend Gleason Gras this year, so Ryan brought him a 2015 Gleason Gras shirt and some TG swag!
With the funds donated to The Gleason Initiative Foundation, we were able to provide Steve DePascale an eye technology kit.
Dear Team Gleason,
We wanted to write you to thank you from the bottom of our hearts for your generously in sending me the WinSlate 13 Eye Gaze Device.
After being diagnosed in August 2011, my progression has pretty much been the same as Steve’s. Starting with arms, than legs, then breathing. Within the first 2 years, I went from being a successful business owner to being totally paralyzed,confined to a wheelchair, depending on ventilator around my nose 24/7.
To say that the device came in the nick of time is an understatement! My speech has deteriorated so much, that my wife, kids, friends & caregivers can barely understand me. Not only that, I’m going to have to get a feeding tube placed because I can no longer swallow solid foods. This is normally a pretty routine procedure, but when I went to get it done 2 years ago, they could not do it because of a prior stomach surgery. Now it has to be a full blown surgical procedure. My doctor is preparing me to the fact that I’ll probably come out of the surgery having to have a Tracheotomy also because my breathing is so bad.
While this wasn’t the end of the world for me, what was the worst was the fact that communication between my loved ones, caregivers & my wife, Susie, would be limited at best. I wasn’t sure I could’ve handled that.
Then low and behold Team Gleason came into our lives! With you’re generous donation of this device, I no longer fear the fact I’ll probably never speak again. In a few months I have mastered the device to the point that I don’t miss my desktop computer one bit! The fact that the unit is unlocked is a game changer. I not only use it for speaking, but also for texting, controlling all my TVs, controlling my Sunos music system, surfing the web & emails. I wrote this email with the device. After having to fight with Medicare/Medicaid for everything I need, The thought of having to deal with them again to get a far less functional device was disheartening.
My entire family thanks you Steve & you’re entire organization. You are truly an inspiration for all you do for ALS patents. You’re grit & determination to raise awareness for this wretched disease is unbelievable. It makes me feel all is not lost.
God Bless you ,you’re family & Team Gleason.
#No White Flags
Liz & Everyone at Team Gleason,
Thank you from the bottom of our hearts for providing Bert with the tobii eye gaze. Bert always said one of the most difficult things for this disease to take is his voice, his means of expression and communication, that was a great fear of ours. The tobii is amazing, and the fact that we do not have the worry of the device being locked or taken, that Bert can use it to its full potential is a huge relief. This tobii is a huge positive for Bert, a motivator to continue to have a voice and to want to use it to keep advocating for ALS. Steve Gleason and Team Gleason is a huge inspiration to all of the ALS community and to Bert and me, this disease is hard in so many ways but acts of kindness like this and all that your organization does for people living with ALS helps so much. Thank you doesn’t seem like enough, know that we are so grateful. I took a few pictures and I wanted to make sure it was OK to share them on social media and post a thank you? Bert has been using the tobii since it arrived and is doing really well with it. We think it is awesome that your cell phone can be set up and that it has an alarm and email and just all the amazing things it is capable of. We were surprised at how natural it seems to become, our kids think the voice is cool so we have their stamp of approval 🙂 Technology is key. Thank you, thank you, thank you.
Bert and Jennifer Lange
#webelievefightals #notquietly #nowhiteflags
With the funds donated to The Gleason Initiative Foundation, Team Gleason was able to send Scott Thomas and his fiancee, Sarah on an unforgettable trip to New Orleans, LA. Steve and a few of the other team members were fortunate to have some free time to be able to spend with Scott and Sarah as well. Below is a summary of their visit:
Our Team Gleason Adventure.
Takeaways: New Orleans culture, it’s food, it’s people, it’s everything are incredible! I now love the Saints and will root for them as long as they’re not playing the Steelers. Steve and the rest of Team Gleason are some of the most special people on earth. Sarah and I are so grateful to TG for hosting on our adventure, and for everything they do for the ALS community.
With the funds raised by Zooneyfest (www.zooneyfest.com), Team Gleason was able to be a part of sending Susan Speranza on an unforgettable trip to see her son. This would not have been possible without the wonderful people at Zooneyfest, especially Jared Bowling. Thank you for making this happen and for including Team Gleason. Please read the below letter from her son, Julian.
Hi Team Gleason,
First and foremost, thank you. Thank you with all my heart! Without your organization and the help of Zooneyfest, the amazing and memorable experience I am about to describe would not have been possible.
My mother was diagnosed with ALS almost 4 years ago and she is a shining example of how a positive attitude can make the most unbearable disorder, bearable. But unfortunately after I completed my training in medical school, I began working in a hospital 5 states away and more than 700 miles from her in New York. I am a neurology resident physician and I am on the forefront of ending this horrible disorder once and for all. Like most physicians, I have a busy schedule and am not able to enjoy as much time as I would like with my mother. Up until last week, my mother had yet to see my beautiful new home and city in South Carolina. That is when with the help of Team Gleason and the Zooneyfest organization from NY, my mom’s one and perhaps last wishes became a reality.
My mother took a direct flight with her identical twin Sandy (who is not affected by ALS), caregiver Michele, and son Aaron to my new home town of Columbia, South Carolina. We were able to spend some quality time together here in Columbia; she was able to see the hospital I worked in and we were able to enjoy some excellent dining before we headed to the beach. At the beach, my mother was able to see the beautiful ocean and dip her feet in the sand thanks to the customized wheelchair provided by the local fire department. We had such a great time and I could just talk for hours about the fantastic time we had. My mother, aunt, caregiver and son had a blast and so did my fiancée and I!
Thank you again for everything you did and for everything you do on a daily basis to support the cause. I am confident that in the very near future, we will end ALS!
No white flags!
Julian Duda, MD
Son of the bravest and most inspiring mother, Susan Speranza!