Parkinson's disease or primary progressive multiple sclerosis;
and
WHEREAS, While the estimated number of people thought to have
ALSP in the United States is 10,000, the exact number of cases
of this disorder is unknown; and
WHEREAS, It is difficult to record the exact number of ALSP
cases, partially because of misdiagnoses and also because the
majority of those with the mutated gene do not know they have it
until they experience symptoms; and
WHEREAS, To be formally diagnosed as having ALSP, genetic
testing is necessary; and
WHEREAS, The current treatment options for ALSP are extremely
limited, with no FDA-approved therapies available; and
WHEREAS, ALSP often does not present itself until a person is
in their forties and has already passed it to their children;
and
WHEREAS, The Sisters' Hope Foundation is a nonprofit
organization that raises awareness and understanding of ALSP and
supports those living with or caring for those living with ALSP,
fighting for the mission of seeing the first survivor of ALSP;
and
WHEREAS, The Sisters' Hope Foundation creates resources and
connections within the ALSP community and offers financial
support to those who have the disease; and
WHEREAS, The Sisters' Hope Foundation encourages those with a
family history of ALSP to undergo a genetic test so that they
have the option in participating in treatments, clinical trials
and research that will help to find a cure; and
WHEREAS, It is important that awareness be raised surrounding
this deadly disease, which may also help families recognize
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