On a medical mission in Guatemala, Alison was working 16-to-18-hour days on cement floors, with little relief from the heat or time to rest. Her legs began to swell, but given the grueling schedule and harsh conditions, she assumed it was normal exhaustion. It wasn’t until she returned home (with symptoms that wouldn’t improve) that she realized something more serious was happening.
It wasn’t until she returned home (with her symptoms that wouldn’t improve) that she realized something more serious was happening.
Alison was eventually diagnosed with AL amyloidosis, a rare and life-threatening disease. The news was overwhelming. Like many people facing a rare condition, she struggled to find clear, reliable information about what to expect. She needed guidance—not just for herself, but for the loved ones trying to support her.
In her search for answers, Alison discovered the Amyloidosis Research Consortium (ARC).
In her search for answers, Alison discovered the Amyloidosis Research Consortium (ARC).
What she found wasn’t just a single pamphlet or website, it was a lifeline. ARC’s support was comprehensive: educational booklets, video content, and most importantly, connection to real people who understood what she was going through. ARC not only helped Alison feel informed and prepared, but it also showed her that she wasn’t alone. And through its commitment to research, ARC offered something just as vital: hope.
As Alison moved through treatment, including a stem cell transplant, her thoughts turned toward the future. Not just her own—but the future of others who would face this disease. She wanted her legacy to reflect her journey and her values. That’s why Alison chose to include ARC in her will.
By making a legacy gift, Alison is helping fund the research, resources, and support that will change lives for years to come. In her own words:
“When you live with the overhanging reminder every 6-8 weeks that you are fighting a rare and deadly disease, you begin to take a more frequent account of what really living looks like. You tend to focus on things in a new way, taking nothing for granted and taking into account all the blessings you receive every day.
I want to leave something memorable behind when I am no longer here to influence change in my world. It is one thing to survive a disease but yet another to learn from it and make an impact on the world in a way that continues to make a difference. To have really lived a good life, I want to leave this world somehow better than when I was brought into it. My parents taught me to be prepared, grateful and organized. I want to leave behind a legacy that helps others be more of what they are called to be- to also live their best life. With specific focus on this disease, since AL limits living a long and good life, there must be some way to make it better than it currently is- a way to impact outcomes and improve them. That cannot be done without a cure, and a cure cannot happen without research. Research cannot happen without funding and funding cannot happen without dollars. Funding research through designating ARC as a benefactor in my Will accomplishes this.
Many of the more common charities seem to get all the attention and as such, all the funding. It is a lovely thing to take care of our Earth and her creatures, but that leaves little dollars left to fund the research that allows longer, disease free living for those with Amyloidosis- A disease still so rare that many have never heard of it and those who have it have spent too much time trying to get diagnosed while the disease ravages their bodies. We need to raise awareness, and we need to raise funds. Through designating funding by leaving funds to ARC is the gift that keeps on living. It helps ensure that others can do just that- keep on living a life free of Amyloidosis.”
This August is Make-a-Will Month — a moment to reflect on the legacy you want to create for yourself and your loved ones. A gift in your will costs nothing today but supports future patients and life-saving progress for years to come.