ALZHEIMER’S ASSOCIATION ADVOCATES CELEBRATE
ALZHEIMER’S LEGISLATIVE VICTORY WITH
AN EYE TO THE PRESIDENT’S 2016 BUDGET
Alzheimer’s Accountability Act Incorporated into Funding Bill Signed into Law
– Alzheimer’s Association Statement –
Washington, D.C., December 17, 2014 – As the largest Alzheimer’s advocacy organization in the world, the Alzheimer’s Association, and its relentless advocates, applaud Congress for creating a formal process to ensure that scientific judgment will guide them in future Alzheimer’s research funding decisions. This critical provision comes from the Alzheimer’s Accountability Act (H.R. 4351/S. 2192), which was fully incorporated within the fiscal year 2015 funding bill signed into law by the President. Because of this action, Congress will be equipped with the best information to determine necessary Alzheimer’s research funding levels in each year leading up to 2025 to achieve the primary goal of the National Plan to Address Alzheimer’s Disease, creating a means to prevent and effectively treat Alzheimer’s disease.
“In setting funding levels, Congress has told us that they want to hear directly from the nation’s top scientists. That’s exactly what the Alzheimer’s Accountability Act does by connecting scientists with appropriators,” said Harry Johns, president and CEO of the Alzheimer’s Association. “The Alzheimer’s Association urged the introduction and passage of this Act so that Congress understands what science will bring us to the day when there will be survivors of Alzheimer’s, just as there now are for the other major diseases in our country.”
Introduced in April, the Alzheimer’s Accountability Act calls for the National Institutes of Health (NIH) to submit a Professional Judgment Budget for Alzheimer’s disease research each year until 2025 to achieve annual research milestones established under the National Alzheimer’s Plan. It will reflect the state of Alzheimer’s knowledge and the required investments in research identified by leading scientists to achieve the plan’s 2025 objective. With the Alzheimer’s Accountability Act, Congress has created a mechanism that will utilize rigorous scientific judgment, rather than shifting political interests and
unforeseen events, to guide Congressional funding allocations to achieve the 2025 goal.
Alzheimer’s Association grassroots advocates and staff held thousands of congressional meetings to secure support for the Alzheimer’s Accountability Act since the bill’s introduction. While the Alzheimer’s Association and its sister organization, the Alzheimer’s Impact Movement, were the only two organizations to endorse and work to advance the Alzheimer’s Accountability Act, the legislation received strong, bipartisan support in both the House and the Senate.
In addition to the Alzheimer’s Accountability Act, the funding bill included a $25 million increase for Alzheimer’s research, which comes on the heels of an unprecedented $122 million increase for Alzheimer’s research, education, outreach and caregiver support in fiscal year 2014. Together, these increases bring annual federal funding for Alzheimer’s research to $591 million. However, scientists have stated that accomplishing the goal of the National Alzheimer’s Plan will require a commitment of at least $2 billion a year.
“According to leading experts, we must dramatically increase research funding to accomplish the primary goal of the National Alzheimer’s Plan to prevent and effectively treat Alzheimer’s by 2025. The Alzheimer’s Accountability Act will ensure that Congress hears directly from scientists what they will need to successfully achieve the federal government’s goal,” said Johns. “We now eagerly look forward to the President’s fiscal year 2016 budget with the tools in place to implement urgently needed, significant increases in Alzheimer’s funding to finally stop the human and economic devastation it causes.”
The winner of the 2014 Walk To End Alzheimer’s® Car Raffle is Rosie Velasquez from Newport News! Congratulations to Rosie for winning a 2014 Camry XLE Sedan donated by Hampton Roads Toyota Dealers.Special thanks to all of our raffle participants – 15,000 tickets were sold! Each step you take helps to fight Alzheimer’s disease.
November is National Alzheimer’s Disease Awareness Month! #ALZSEVA http://ow.ly/DLcXH
I’m walking to help reclaim the future for millions. By participating in the Alzheimer’s Association Walk to End Alzheimer’s?, I’m committed to raising awareness and funds for Alzheimer research, care and support.
A few years ago, Jim and I started the process of trying to figure out what was going on with him. Things just weren’t right and since there is not a test, like cancer or diabetes, to give you an answer right away, we started the very long process of ruling out everything else. No, he hadn’t had a stroke, didn’t have a brain tumor, didn’t have high blood pressure, heart problems, thyroid problems, AIDS or syphilis. He endured long psychological testing, MRI’s, CAT scans, a spinal tap (very painful) and so much more. We are at the beginning stages of a disease that has no cure and really no hope. Unfortunately at some point our children, ages 8 and 11 will realize this and realize they are slowly, very slowly losing their father.
I already miss him. The man I married is no longer living with me. Instead, I have a man that is struggling to remember names, what we are doing this afternoon and what he did this morning. Some days are better than others.
Early Onset Alzheimer’s Disease is sometimes hereditary, as in Jim’s case. His brother and Mother both had this slow, horrible disease.
Please help find a cure. I am counting on you. My children are counting on you. Millions of others are counting on you. One day, if you haven’t been touched already, someone you love will no longer be able to explain to you how you know each other. When that day comes, you will pray and cry and desperately search in vain for answers, help and a cure.
Currently, more than 5 million Americans have Alzheimer’s and that number is expected to grow to as many as 16 million by 2050. Our future is at risk unless we can find a way to change the course of this disease.
I need your support to do my part! Please make a donation to help the Alzheimer’s Association advance research into prevention, treatments and a cure for Alzheimer’s. For the millions already affected by the disease, the Association offers care, education, support and resources in communities nationwide.
We walk for our grandmother, Georgia Green Johnson and for our dad, Eugene W Johnson, Jr.
Our story starts back in the late ’90s when we lost our grandmother to this horrible illness.
We can remember walking into the nursing home to visit. She would be so scared and in a fetal position because she didn’t know who we were. It was horrible to watch how this illness had taken the strength of such a strong willed woman and turn her into this fragile person. Near her end we had stopped in to visit with her, I said, “hey Granny, it’s Teresa” she looked up at me and as she stared at me she had a tears roll down her face and then she smiled at me. I felt at that particular moment she knew who I was. It would only be a month later she would pass.
In Oct 2010, our father was rushed to the hospital. He had a stroke. It was then our lives would change forever because our dad was diagnosed with Alzheimer’s. For me (Teresa), I immediately went into denial. I actually couldn’t bear to think that this man who was a work horse had this horrible illness. Our dad was the “Jack of all Trades” he had bulldozers, cranes and dredges.. the kind that build bulkheads and widen canals. He even had a fish farm raising red striped bass and catfish. When he was a younger man, he and our grandfather worked on building the Chesapeake Bay Bridge Tunnels (they were involved in the actual sinking of the tunnels and connecting them to the road).
For me, I felt if I stayed away, it wasn’t true. As for my younger sister, (Tammy), she stepped up. She went to all his doctor appointments and would take him to her home over the weekends to give our mother a break. She and her husband went above and beyond to help care for our dad.
As the illness progressed, our mother, his wife of 53 years vowed to keep him home. To keep him in the home he built for her some 54 years ago and had raised their 4 children in. At this point, I knew I had to start helping, I would go in the afternoon to sit with our dad while mom would do her bus route. It would be sometime later that we would start getting help in the mornings and then later we would receive help in the afternoons. Last year he had another mini stroke which left him really weak.
Tammy could no longer take him to her home anymore due to him not being able to walk very well, so she would stay a night on the weekend to help mom out. By January 2014 things started turning worse with the illness. He would know us one day, the next he wouldn’t and the next day we were much younger in age which would confuse him as to why he knew us but just not at the age we were. By April things were steadily declining. My father was requiring constant care 24/7. We would have an aid in the morning and the afternoon. I would relieve the aid Monday-Friday and Tammy would relieve me. Weekends were a toss-up on whoever could do what.
At one point, things were so bad that the hospital sent an RN to evaluate him. She told us that we could have until August but felt things were progressing faster than that. What our father did do before he started the spiral downhill in the earlier stages back in 2010, was he put a DNR in place, he released us of the burden to make the decisions of what he wanted…. his wishes were plain and simple. (with that said, that was easier said than done).
Our normal lives were no longer. We were devoted to providing the best care that we could give to our dad. Our homes, our spouses, and our children were set aside because our plates were full. They were supportive of what we were doing for our dad. It was at this point Tammy, mom, and I knew what the meaning of “his caregivers” meant.
In July 2014, Hospice was called in. Dad was no longer eating and his fluids were consistent to a cap of water every hour until he could no longer drink or swallow. For the most part he was incoherent and unconscious. Then one morning he just sat up as if he was never sick. He looked good, he knew us all but Hospice had told us before this that we would go through what they call “false hope”. It was 3 good days that we would cherish forever….as we watched as he slowly slipped away from us. On August 9th, in his home of 54 years with his devoted wife of 53 years, Tammy and I beside him, he lost his battle to this horrible illness.
We walked last year for the first time. Our team “Forget-me-Nots”. This year we will walk again in honor of our dad.
We walk to raise awareness.
We walk to raise money to help other families and to help fund the research to end this thing.