Advocacy & Awareness
past year we have made monumental strides in our fight against the #1
disease killer of our children in our country and will continue to do so
with the continued support of people here in our communities, in our country, and across the world.
Childhood Cancer STAR Act unanimously passed the House & Senate and
has been signed into law by the President. This is the bill so many of
us have been working to pass for years now, traveling to Washington DC
multiple times a year, meeting with our Senators & Congressmen to
explain the need for the most Comprehensive Childhood Cancer bill ever
introduced. We are beyond thankful for the unanimous support we received
to pass this bill. The STAR Act stands for Survivorship, Treatment,
Access, & Research. This legislation authorizes $30 MILLION annually
from 2019 to 2023 for desperately needed programs and research related
to childhood cancer.
Right to Try Act passed and was signed into law giving children with no
options Hope for survival by giving them access to experimental drugs
that show promise but are not yet FDA approved.
RACE for Children Act (The Research to Accelerate Cures and Equity for
Children Act) unanimously passed and the President has signed it into
law. The Race for Children Act will bring new drugs to kids with cancer
by authorizing the FDA to require that novel drugs developed for adult
cancers also be developed for children when the molecular targets of the
drugs are relevant to childhood cancers.
year the Food and Drug Administration approved the first treatment that
genetically alters a patient’s own cells to fight cancer, This
treatment is for patients with a type of acute lymphoblastic leukemia (ALL),
which is the most common form of Childhood Cancer. Scientists
genetically modify a patient’s own immune cells in the lab, then infuse
these new cells back into the patient’s body. These modified cells –
called CAR T cells or chimeric antigen receptor T cells – then prompt
the child’s own immune system to attack and kill the leukemia cells.
This is a huge milestone that will transform future treatments for our
kids. A treatment that holds great promise for all Childhood Cancers.
own Foundation, with the support and generosity of our communities will
be opening a Childhood Cancer Haven named The Heroes Hangout, the first
of its kind in the country. A place where our Heroes can come hang out,
play video games, do crafts, ‘shop’ for toys (at no cost!!), and just
have fun like all kids should. We will hold special events on the
weekends and Holidays. The Heroes Hangout will not only be for our
sweetest children but for the parents as well. To see your child happy,
to bring them joy and laughter while they are going through such a
traumatic and painful experience is a feeling that is indescribable
unless you have lived through it. The financial burden of a parent with a
child battling cancer is most often times overwhelming to the point
where many must file for bankruptcy. Although there is no greater joy to
these parents than to see their child with a smile on their face, the
simple task of buying a toy is often a luxury that most cannot afford.
The Heroes Hangout will help parents in this sense as they will have a
place to bring their child that will allow them to enjoy the happiness
on their children’s faces in a stress-free environment away from the
hospital and the potentially deadly germs of the outside world, at no
cost to them whatsoever.