Name Transition FAQs
A: Our community has grown and diversified over our 70+ year history. While
"Cooley's Anemia" carries a deeply significant legacy, it is no longer the clinical
language used by modern medical professionals or easily recognized by new
generations of patients and families seeking support. It is also worth noting that
"Cooley's Anemia" has historically referred to Beta Thalassemia Major, while
Thalassemia Foundation of America reflects the full spectrum of thalassemia types and
people we serve. For families navigating a fresh diagnosis, a modern, medically
recognized name provides immediate clarity and understanding. Furthermore, aligning
our identity with current hematology standards strengthens our clinical authority and
eliminates barriers when we advocate for next-generation research funding on a
national scale. This is a new name. It is not a new mission.
A: The transition to the Thalassemia Foundation of America (TFA) will begin through a
phased rollout, starting with direct communication to key stakeholders and continuing
through the patient/parent conference in July. You will start seeing our new name and
updated look appear gradually across our website, letters, social media channels, and
digital communications, with the official name change expected to be in place by
January 2027. Because we prioritize directing our resources toward patient programs
and research rather than marketing campaigns, this roll-out will be steady, deliberate,
and cost-effective. All primary communications will carry the line "Formerly Cooley's
Anemia Foundation" so that everyone who knows us can find us, and everyone new to
our community understands our roots.
A: This name was the result of a thoughtful, deliberate 18-month process involving our
board members, medical committees, patients, parents, medical professionals, and
donors to ensure the final name reflected the needs and values of our entire
community. We wanted a name that speaks clearly to the entire country, removes
ambiguity for institutional funders, and instantly validates the clinical reality of the
people we fight for. The word ‘Foundation’ emerged as the strongest signal of
charitable purpose and continuity. “America” tells the world where we are
headquartered and who we are accountable to, without limiting who we fight for.
A: Absolutely not. Our mission remains exactly what it has always been: ensuring every
Thalassemia patient lives a longer, fuller life, and working tirelessly until we find a cure
for all. We are completely dedicated to advancing life-saving Thalassemia research, advocating for patient access to comprehensive care, and providing direct support to families. This name
change gives us the ability to reach more patients, attract more partners, and make a stronger case for the resources our community deserves.
A: Nothing changes about how we honor him. Dr. Cooley’s legacy is not just part of our
history; it is part of our DNA. The Cooley's name will have a permanent dedication on
our website, and we are planning a commemorative initiative to ensure his
contributions and the extraordinary founding story of this organization are honored for
generations to come. By stepping into a modern name, we are continuing the work Dr.
Cooley helped make possible.
A: Our history is something we carry forward with pride. Dr. Cooley's story, and the
remarkable founding story of Frank Ficarra and the parents who gathered in the back of
a Brooklyn butcher shop determined to change the world for their children, will have a
permanent home on our website and in our history. We are also planning a
commemorative initiative to ensure that the people and moments that built this
organization are never forgotten. The Cooley's Anemia Foundation will always be
where we came from: Thalassemia Foundation of America is where we are going.
A: During our transition period, all primary communications will carry the line "Formerly
Cooley's Anemia Foundation" to ensure continuity and recognition across our entire
network. We want every long-time supporter to find us easily, and every new patient or
family to understand our roots. We will continue to incorporate "Formerly Cooley's
Anemia Foundation" for as long as necessary to firmly establish the Thalassemia
Foundation of America within our community and among our partners.
A: No. Our people, our programs, and our commitment to the Thalassemia community
remain completely unchanged. The same dedicated team that has supported patients
and families, funded research, and advocated for the Thalassemia community will
continue doing exactly that. This name change is about expanding our reach and
securing more resources, so we can strengthen these vital services and build a stronger
future together.
A: Not at all. Your daily access to our support networks, resources, and patient services
will remain entirely uninterrupted. If you receive financial assistance, medical grants, or
participate in our patient programs, everything continues exactly as before. The only
difference you will experience is a new name and logo on the materials, letters, and
emails we send to you.
A: Yes, absolutely. All donor records, giving histories, and relationships transfer
seamlessly to the Thalassemia Foundation of America. Nothing is lost, reset, or
changed. You will continue to receive the same acknowledgments, tax receipts, and
communications you always have, just under our new name. If you are a recurring
donor, your contributions will continue without interruption.
A: Your recurring donations will continue without any interruption. There is no action
required on your part. However, if you have included the Cooley's Anemia Foundation
in your estate plans, we do recommend updating the legal name to Thalassemia
Foundation of America to help ensure your intentions are carried out as you wish. If you
have any questions or need documentation to support that process, please don't
hesitate to reach out to us at info@thalassemia.org.
A: Our website will reflect our new name and identity, and all links and URLs will
redirect seamlessly to the current site (thalassemia.org). Our social media handles will
update to reflect the Thalassemia Foundation of America, but if you already follow us,
you won't need to re-follow. You will stay connected to us automatically.
During the transition, you may see both the old and new names in circulation. That is intentional and expected. As always, if you are ever unsure, you can reach us at
info@thalassemia.org.