2024 – A Celebration of our Success
Our Fundraisers, over the last 8 years, have been focused on research
and I am thrilled to report that people living with systemic lupus
erythematosus (SLE) have new drug/treatment options. In over 60 years there have only been 3 new
drug options which target Lupus. Two of
those have been developed in parallel to our efforts to raise awareness and, as
a team, over $150,000 for this cause.
I am so grateful for all your support!
Saphnelo is the third therapy for lupus to receive regulatory approval
since 2011. The U.S. Food and Drug Administration approved anifrolumab
(Saphnelo) in early August 2021 and it became available
to me this year when I needed it most.
2023 started out very difficult for me. Benlysta, the drug I had been using for more
than 10+ years stopped working. I was struggling with significant pain, continued
vasculitis flare ups, increased difficulty breathing, surges in blood sugar
from big steroid boosts, weekly chemo and a general feeling that I was losing
the battle as my immune system continued to attack my blood, organs &
tissue. The Benlysta I was on was FDA approved in
2011 and, at that time, was the FIRST drug approved to target Lupus in more
than 50 years.
I am strong today and ready to fight harder than ever to ensure that
research continues, treatment options are available to all, and most
importantly when the Saphnelo stops working there will be something new on the
horizon.
I have NOT given up on my belief that Mesenchymal Stem Cells (MSC’s) are
a cure for Lupus. This year has been
exciting as we work with bioscience teams to develop a compassionate use case
for MSC’s for Lupus patients. Dr.
Hernandez and I had the great pleasure to meet with and tour a Regenerative
Medicine banking facility and came away with hope that we may see benefit in my
lifetime and the possibility that Stem Cell therapy for me could be a
reality. Next year I plan to focus my
efforts in this area. In the meantime – let’s
go out with Fireworks and make it a record final year for Run For Research
Lupus Foundation.