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Fighting ALS on Every Front

(Last Updated: August 2018)  

The daily battle against ALS continues. It’s been almost 10 years since we lost Rob, and for many of us, the pain of that loss has not lessened. Although research efforts are progressing, the disease continues to be a death sentence for those afflicted. While we inch towards better treatments and possibly a cure, the focus of The ALS Association Florida Chapter is primarily on financial relief for affected families.

Rob was very fortunate to have friends and family to support him as he lost his ability to work. Diana was forced to stay home to assist him and young Jackson. He was showered with time, financial assistance, and prayer throughout his long illness. His employer MAC Papers went well beyond what most employers would do for Rob, treating him more as a family member in need than an obscure employee among many.

Below are a few short stories of families currently battling the effects of this disease. The monies donated to the Florida Chapter largely go to provide these types of assistance:

Joe, age 50, was diagnosed with ALS in 2017. His spouse is currently on unpaid leave from her job as she is his sole caregiver. Their total monthly income is more than $1,000 short from covering their monthly expenses. A grant from The ALS Association Florida Chapter was used to help remodel their bathroom, as it was not accessible. The door was widened, a roll in shower was constructed, the toilet was moved in order to accommodate a Hoyer lift, and an ADA compliant sink was installed to allow Joe to keep some independence while brushing his teeth.

Brian, age 63, is married and has a 16-year-old son. He was diagnosed with ALS in 2016. He needs assistance with all activities now and his wife’s salary is the only source of income. The family desperately needed to modify their bathroom to make it accessible for a power wheel chair now. The Florida Chapter provided the funds so that the door was widened, the curb on the shower was removed for easier access, and the toilet was moved to create more room and make it safe for him to use.

Lisa, age 38, was diagnosed with ALS in May 2016. She is power wheelchair dependent and has lost all use of both her arms and legs. She and her husband, her sole caregiver, asked for assistance to help pay the bill for mechanical work completed on their conversion van, which is the only mode of transportation for her. In her husband’s words, “As we move forward through this ALS journey, I am painfully seeing our monthly expenses are exceeding our monthly income. I am husband, father, full-time caregiver, and full time employee. My income is barely keeping our heads above water.” The Florida Chapter provided the necessary funds to complete the conversion.

Phillip, age 53, was diagnosed with familial ALS in the beginning of 2016. Relying on a scooter now, Phillip received support from the Florida Chapter to build a ramp to get in and out of his home via the front door. He lives alone and the ability to safely and independently use his scooter is crucial for him. Friends in the ALS community offered to provide the labor to construct the ramp free of charge, if the needed material were provided. The Florida Chapter was honored to be able to meet his need.

Steve, age 47, was diagnosed with ALS in February 2017 and is now confined to a wheelchair. His wife and sole caregiver is also disabled and unable to work. With no money left to cover their daily expenses, they requested help to purchase a hitch and wheelchair carrier to be able to get Steve to his doctor’s appointments. The Florida Chapter purchased the hitch and carrier and had it installed.

Harrison, age 42, was diagnosed in June 2017. In order to care for him, his wife and sole caregiver has had to reduce her hours at work, resulting in a decreased pay rate, making it difficult to meet monthly expenses and afford the care necessities her husband so desperately needs. Their children are involved with his care; however, they are not able to contribute monetarily. Financial support from the Florida Chapter was used to help modify the home to be wheelchair accessible.

By May 2016, Charles, age 57, could no longer work due to limited mobility. His wife became his full time caregiver and financial supporter of all household expenses and medical expenses. After completing various tests and visiting with several specialists, Charles was finally diagnosed ALS in May 2017. The Florida Chapter was able to provide financial assistance to help widen the bathroom door in order for him to have easier access, allowing him to maintain more independence in caring for himself.

WE all know and remember the helpless feeling of a loved one with ALS, but at least we all were able to help Rob in many other ways. These families are not as fortunate.

THANK YOU for continuing to remember and love my brother. 

(Last Updated: October 2015)

The Rob Squires Hope Fund recently passed a milestone of fund raising to the tune of $50,000. I want to thank all of you for your VERY generous contributions. I am certain each of you are involved in other charitable endeavors, whether through monetary assistance or time, or both. Your support of this one is I am sure a way to stay just a little closer to Rob, as we all still miss him. His son Jackson has grown into a fine young man, 14 now, 6 ft, 180lbs and playing guitar like Rob and I only ever dreamed we could. I know Rob is incredibly proud of him and who he has become.

The ALS Association Florida Chapter continues to do amazing work. I meet with them occasionally to discuss new developments in treatment and the many ways they help the ALS community. I still remember a trip to Disney with Rob's family and some friends back when Rob was first wheel chair bound. We were sitting by the pool and a family walked up and starting talking to us, and Rob in particular. They asked if he had ALS. He said yes, and then they proceeded to tell us that the mother of 3 standing before us, all of 30 years old, had just been diagnosed. They were terrified. Seeing Rob in that chair gave them a glimpse of things to come. Rob, in his normal caring compassionate calm way answered many of their questions. I could tell that when they walked away they had a renewed sense of fight. A sense that they were not alone, and had many resources available to them they had not conceived of. He also pointed them to The ALS Association, which I later learned had helped this family over the next couple of years.

This kind of assistance is what The ALS Association does. Unless it's happening to someone you know, you don't see them. But they are out there, every day, helping families from the first day to the last. I have included some testimonials from folks who have been helped by the association. I can assure you that the money that is being raised is helping those that have received the worst possible news. The people I have met at the association are amazing. There are many people out there thanking God every day for the work that they do.

So why did I decide to start “The Rob Squires Family Fund”?

Not to glorify Rob.  He would not have been happy about that at all.  He spent his last years trying to find ways to help others.  His life will be remembered for how he influenced so many, primarily with his faith, and his strength in dealing with a disease that has only one outcome.  This Fund is about others.  About continuing what Rob showed so many.  About helping people we don’t even know.  About helping people who don’t have all of the support and blessings Rob had throughout his illness.  Families whose only bread winner has been stricken.  Families that maybe don’t have others to care for them, or people who live alone.  People who have no insurance or disability coverage to help pay the bills.  People who do not have employers as generous as Rob did.  People who can’t pay their mortgage, or pay the electric bill, or buy books for their kids schooling.  All of the thing we take for granted.  And while these families are dealing with these horrible issues, they are watching a loved one fading away from them day by day, with one certain outcome.

This Fund is to honor the memory of Rob the way he honored all of us in the way that he lived, and died.  This Fund is about others.  Others going through what Rob did, but without all of you, who made it tolerable for Rob and his family.  The money contributed will be utilized by The ALS Association in whatever way they see as being the most critical need at any one point in time.  Their mission statement reads “To lead the fight to cure and treat ALS through global cutting edge research, and to empower people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support”. I can’t imagine what some of these less fortunate folks and families are going through, right now, as they deal with ALS emotionally and financially, without all the blessing Rob clearly had.  I have met with The ALS Association many times, making certain their philosophy and energies matched what we all loved about my brother.  It does, and your support will most definitely help others, in the same spirit Rob helped so many.

Visit The ALS Association Florida Chapter's website to learn more: www.alsafl.org

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