Join our email list to stay up to date on the latest Amyloidosis news.
Scott Neely
Director of Development
Amyloidosis Research Consortium
Scott Neely with his partner Lauren.
Before I joined ARC, I worked alongside Dr. Raymond Comenzo at Tufts Medical Center. Together we helped build one of the first dedicated amyloid programs. That work was my introduction to amyloidosis and to a patient community trying to navigate a rare disease with limited options and limited support. I never forgot that experience.
I spent the years since working across healthcare and nonprofit fundraising, with roles at the Cam Neely Foundation for Cancer Care, March of Dimes, and Rodman for Kids. Over 25 years in the field I have learned how to recognize when an organization is doing the work that truly makes an impact. When I had the chance to look closely at ARC, what I found was an organization doing exactly that.
ARC’s board includes Dr. Comenzo, as well as some of the sharpest clinical and scientific minds in amyloidosis. The organization has spent a decade building the infrastructure this community needs and it is producing results that were hard to imagine when I first learned about this disease. Seven new therapies have been approved. Expert centers have expanded. Thousands of patients are now connected to care, education, and community every year.
I have worked across enough diseases and enough organizations to know that the window where momentum can compound matters. ARC is in that window right now.
There is still work to be done. People are still waiting too long for a diagnosis. Expert care is still out of reach for many. The next generation of treatments still needs building. I have worked across enough diseases and enough organizations to know that the window where momentum can compound matters. ARC is in that window right now. The people investing in this community right now are shaping what the next decade looks like for patients.
ARC has been central to progress in amyloidosis for a decade. Here are a few ways I’ve seen the staff here creating even more progress for the amyloidosis community.
Accelerating Research
The Amyloidosis Forum is ARC’s flagship research initiative. It brings together leading experts from academia, industry, and regulatory agencies, including through a formal partnership with the U.S. Food and Drug Administration, to address the scientific and regulatory challenges that can slow new treatments down.
As the only collaboration of its kind in amyloidosis, the Forum tackles problems that no single organization can solve alone.
Last year’s annual meeting brought together more than 350 global experts, including more than 100 members of the FDA. In my experience, getting that many of the right people in the same room — researchers, regulators, clinicians, and industry partners all focused on the same issues — is rare.
It is also where progress begins.
Every day a therapy remains in development is another day patients continue to wait. The Forum helps shorten that timeline.
Improving Care
Getting an amyloidosis diagnosis is one challenge. Getting access to the right expert care is another.
Many amyloidosis patients see multiple specialists before receiving an accurate diagnosis. That can mean months, and sometimes years, of uncertainty, wrong turns, and worsening disease.
ARC’s healthcare provider education programs are designed to reach the medical specialties most likely to encounter patients during that time, including hand surgeons, cardiologists, and neurologists who may be seeing signs of the disease without yet recognizing them.
By increasing understanding and awareness, ARC is helping reduce the time to diagnosis.
ARC also funds the Clinical Fellowship Program, which directly addresses the shortage of amyloidosis specialists. By placing early-career physicians in leading amyloidosis centers, the program gives them the focused training and clinical experience needed to build careers in this field.
The fellows I have met speak about the program as a turning point. It is a chance to go deep on a disease many physicians have barely heard of, with mentors who have dedicated their careers to it.
When you train a specialist in amyloidosis, you are not impacting just one career. You are helping every patient that physician will go on to diagnose, treat, and support.
The first cohort of ARC Clinical Fellows
Supporting Patients
This is the part of ARC’s work that struck me most when I arrived.
ARC is often the first call a newly diagnosed patient makes. The helpline is staffed by a qualified social worker with rare disease experience. A real person they can speak with who understands the disease, cares deeply, and can help a frightened or overwhelmed caller figure out what comes next.
ARC’s PEER Link mentorship program connects newly diagnosed patients with trained volunteer mentors who are living with amyloidosis themselves. Mentors can offer something no clinician fully can: lived experience, understanding, and connection.
Community matters in every disease. But in a rare disease like amyloidosis, where patients and loved ones can so easily feel isolated, it can be life changing.
ARC’s online My Amyloidosis Pathfinder (MAP) tool connects patients to specialist centers and clinical trials based on their disease type and location. More than 6,500 people used the platform last year.
For a rare disease community, this level of support infrastructure is not standard. ARC built it because patients needed it.
There Are Many Ways to Help
I joined ARC because I believe in what this organization does. Part of my role is helping people find where they fit in this work. The three areas above reflect where support matters most and there are paths for everyone connected to ARC to impact each one of them.
Some people want to make a financial gift. Others want to do something more personal or hands on. Some want a direct role in shaping what ARC builds next. Whatever that looks like for you, I want to help you find the right fit.
If you donate appreciated stock directly to ARC, you may avoid capital gains tax and deduct the full fair market value. For donors with long-term positions, it is often more efficient than writing a check.
If you have a Donor Advised Fund (DAF) through Fidelity Charitable, Schwab Charitable, or another institution, you can direct a grant to ARC through your fund administrator. ARC’s federal tax ID is 47-2589708.
Donors who are 70½ or older may also consider making a Qualified Charitable Distribution (QCD) from an IRA. In 2026, eligible donors can give up to $111,000 per year directly to a qualified charity. A QCD counts toward your required minimum distribution and is not treated as taxable income. Please consult your financial or tax advisor to determine what is best for your situation.
A planned gift is another way to leave a lasting impact. Through a will, a trust, or a beneficiary designation on a retirement or investment account, you can ensure that your support for the amyloidosis community extends beyond your lifetime. There are many vehicles for making a planned gift and ARC can work with you to find an approach that fits your situation. If you have already included ARC in your estate plans or are thinking about it, please reach out. We would love to connect.
One of my favorite parts of this work is hearing from people who want to do something more personal than writing a check.
Suri Harish is walking the Honolulu Marathon this December at 80 years old, raising money for ARC 20 years after doctors gave him a two-year prognosis. He wanted to do something meaningful, and we helped him build a fundraiser around it. If you have an event, a milestone, or an idea, reach out. We would love to make it happen.
If you are interested in a more direct role, I want to hear from you too. There are ways to be closely involved in ARC’s direction, including through board membership.
None of what ARC does gets built without people who choose to invest in this community. Every part of this work depends on people who care enough to back it. I want everyone who gives to ARC to feel that connection clearly, and I want to hear from you about what matters most. The programs we run exist because the community told us what was needed. I am here to listen.
Please reach out, I would be glad to help.
Scott Neely
Director of Development
Amyloidosis Research Consortium
giving@arci.org
(617) 467-5170
Support ARC’s Work →
