What if there was a disease that affected over 5 million Americans? What if it was the 6th leading cause of death in the U.S.? And it couldn’t be prevented, cured, or even slowed. Well, unfortunately, there is such a disease and it is called Alzheimer’s. This disease is going to continue to grow and affect more and more people as it is expected to reach 13.8 million Americans by 2050, barring the development of medical breakthroughs. Not only does Alzheimer’s affect the lives of individuals with the disease as well as their families and friends, but also the most expensive malady in the United States. Alzheimer’s is going to cost Americans an estimated $226 billion in 2015, with $153 billion coming from the cost to Medicare and Medicaid. To put that in perspective, in 2010, the direct costs of Alzheimer’s was $109 billion, while heart disease was $102 billion, and cancer was $77 billion. Alzheimer’s is by far the most expensive disease due to the care that’s needed just to get affected individuals through daily life. However, Alzheimer’s is rarely talked about in the same regard as cancer or heart disease.
“It is imperative, now more than ever, to raise awareness and education about Alzheimer’s and to promote greater understanding of this disease so it can be detected early on and eventually a treatment and cure can be discovered,” said Martha Richardson, executive director of the Alzheimer’s Association, Vermont Chapter. The best way to promote awareness is through advocacy and education. Local Vermonters such as Mohamed Basha and Tim Fortune from TLC Homecare Services, LLC, and Tara Graham and Allyson Sweeney from The Arbors at Shelburne teamed up with long-time advocate Daniel Bean to push further funding for Alzheimer’s research at the 2015 Alzheimer’s Association Advocacy Forum.
The Advocacy Forum is an annual event that brings together over 1,000 advocates from across the country. Every state has representation and most of the states have advocates who have lived with or through this devastating disease. These advocates share stories of heartache and triumph in order to inform and educate the congressional delegates from each state with hopes of gaining support for legislation to increase funding for research.
Daniel has been directly involved with this fight since 2003 after his first wife died of Alzheimer’s following a nine-year battle. Dan has helped lead the charge for Vermont and this was his 7th time attending the forum. “About 10 years ago, I had the opportunity to attend one of the forums and found it so inspiring and motivating that I continued to attend. Also, it is a forceful way to impress upon congress the scope of the problem and the need for more research.” Since attending the first year, Daniel noted that it grew from a few hundred attendees to over 1100 this past year. He continues the fight against Alzheimer’s because there has been little progress toward treatment and noted that “until congress really responds with the amount of money needed ($2 billion per year) we will not really see progress.”
Mohamed and Tim decided to attend this event in hopes of helping Vermont gain valuable resources for the fight against Alzheimer’s. Mohamed, CEO of TLC, who attended for the first time said “it was eye opening to see and hear people from all walks of life from across the country sharing their stories and struggles on Alzheimer’s.” He began to get involved with the fight after his father-in-law was diagnosed with the disease and consequently passed away a few years later. “It was hard to watch him not recognize his own grand kids and not be able to remember to eat or drink.” He noted that this annual event is crucial to finding a treatment and cure as the goal is to bring attention of our legislatures to the drastic impact it has on our society today and the devastating impact that it will have on our healthcare 25 years from now if we don’t act immediately.
Tim, who is the Vice President and Community Liaison at TLC attended this event for the second consecutive year and noted that “it was so empowering there, being surrounded by over 1000 people who share the same passion to find a cure to this disease.” He has been part of the fight for 6 years as he has become a key member of the Walk to End Alzheimer’s in Vermont and plans to continue to be a part of the fight because he wants to “bring political attention to the crisis for not only a cure, but also support and education.”
Allyson and Tara have both attended the event for the past two years in hopes of creating a “campaign that acknowledges and educates the community about this disease and the many, many layers of it – good, bad and indifferent.” Allyson, Director of Community Relations, was introduced to the disease in 2009 and continues the fight because of all of the devastating stories she hears from families she interacts with. “This disease often robs them of their loved ones and leaves them heartbroken and worried about what’s next. And no matter who it is, nobody deserves this and a world without Alzheimer’s is something that I want to see one day.” She became involved in the annual forum while advocating at the local level and knew right away that she wanted to be a part of something much more.
Tara, Executive Director, has been inspired to help spread awareness through both personal and professional experiences. “I have become inspired to change how our community responds to and understands Dementia and Alzheimer’s from having worked with and fallen in love with people who are at the end of this tragic disease.” Since she serves as a Volunteer Ambassador from the Alzheimer’s Association to Senator Bernie Sander’s office, Tara feels as though she has a moral obligation to advocate and speak about the needs of people living with this disease. “After attending the forum and experiencing the tremendous power of a coordinated advocacy effort; it would be hard to miss the opportunity to participate. I feel a sense of obligation to advocate for advancements in research, funding, awareness, practices and policies.”
It is absolutely critical to increase people’s understanding of this disease and each one of these individuals is playing a key role in raising awareness as well as funds for research and medical advancements. They are ensuring that Vermont is represented at this forum and by being the voice for each individual, family, and friend who is affected by this devastating disease, one day all of us can hopefully say “Yes, we did it. We won this fight to end Alzheimer’s.”