This week 1,300 Alzheimer’s advocates converged on Washington D.C. in a sea of purple to meet with lawmakers and discuss the urgency of the issues surrounding this disease. The atmosphere was one of hopeful determination.
As I reflect on the events of the past few days, I am more determined than ever to turn the tragedy of my personal loss into the triumph of a cure! This is what I have learned.
- Advocacy is essential. As one lawmaker so aptly put it: Nothing happens in Congress without these efforts. Our voices provide momentum and direction. The enormous sacrifice advocates made to be in Washington D.C. this week represent assurance their efforts will reap benefit.
- Our voices have been heard. Gone are the days of explaining this terminal disease, its heartbreaking consequences, and the enormous financial cost it presents. Lawmakers are aware of the impact Alzheimer’s has on all of us and are taking action.
- We have enormous support. Family members are not alone in this fight. Community leaders, healthcare providers, researchers, public figures, and politicians join them as champions for this cause.
- Funding this disease is smart. Experts believe an annual budget of $2 billion will be required to cure Alzheimer’s. Currently, our Country spends $259 billion a year to care for those with this disease. The discovery of a cure will benefit everyone and free funds for other needs.
- There is momentum towards a cure. The necessary components in finding answers are being accomplished: significant research and the funding to sustain these efforts. The $414K requested increase this week would put us over the halfway mark.
- Threatened change brings focus. There is much concern over the proposed cuts in healthcare funding. However, as status quo is challenged, I believe the most expensive disease in America will gain more attention. Finding a cure for Alzheimer’s will save our Nation billions of dollars.
- Our leaders are engaged and affected. Lawmakers are eager to hear our stories and are taking action in support of important bills and funding. Most are also personally affected. One lawmaker stood in the hallway with his arm around an advocate, mourning the loss of his friend, her father, together.
- There is an atmosphere of hope. As one researcher put it, the cure is very likely sitting in a petri dish right now. Anxious anticipation is prevalent as research participants report positive results. Advocates walking the halls of our Capitol bore expressions of hope, not despair.
- Advocacy can happen anywhere. These efforts do not just happen on the banks of the Potomac River. Letters, phone calls, and participation in town hall meetings are essential in maintaining the momentum achieved this week. Everyone can help make a difference!
- The fight is not over. Great strides have been made in recent years. However, I return home to the reality of the enormous loss I have personally experienced due to this disease. 5.5 million Americans continue a battle they will not win, absent a cure. We must continue the relentless pursuit of a cure.
Please write and call your lawmakers and ask them to support increased funding for Alzheimer’s research, as well as PCHETA, the Palliative Care and Hospice Education and Training Act. These efforts will insure the first survivor of this disease is found.
Judith Ingalsbe is passionate about bringing understanding to those experiencing the effects of dementia. She joins advocates in Washington D.C. annually to secure funding for research and HOPE for those affected. Judith has gleaned over a decade of caregiving experience with her parents, who were both diagnosed with Alzheimer’s disease and shares these insights in Stone Benches: Understanding the Invisible Footprints of Dementia. For more information visit StoneBenchesJourney.com.