Dear CGD Community,
Welcome to the first issue of the CGD Association of America's e-newsletter. This is our initial step in creating the first independent community dedicated to patients with Chronic Granulomatous Disease (CGD), parents,
and
CGD carriers.
We look forward to being in touch with you to share stories of inspiration as well as the latest news and information about CGD research, treatment, and curative options.
I became a CGD advocate when my son, Sebastian, was diagnosed with X-linked CGD in 2012 at five months old; after a long and difficult road, he is doing well after undergoing a stem cell transplant in 2016. Through our experience, I understand the tremendous burden we all share when it comes to making the right decisions and navigating the perilous path that CGD presents after diagnosis.
While we've seen advancements in treatments and curative options, none of these is without considerable risk. That's why it is our mission to provide access to independent information and research that is dedicated to our community. To achieve this goal, we are grateful for the support of
our medical advisory board
, which is comprised of top CGD physician researchers across the U.S.
Also, importantly, as an X-linked CGD carrier, I aim to shine a light on the mothers, grandmothers, daughters, and sisters that have long been overlooked. We will strive to share the latest news and treatment options for our special community of strong women and girls.
As we move forward, we welcome you to connect with us to share your ideas, suggestions, and stories to grow our voice and make a difference within our community. If you know someone who would like to be on our email list, please send us their email address. I look forward to being in touch and continuing to help educate, empower, and connect patients, families, and carriers with CGD.
Thank you,
Felicia B. Morton
