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East Oregonian
Thursday, July 30, 2015
DISORDER: Experimental drug not available for women
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wheelchair.”
As Arroyo ages, her condition
gradually worsens. Waiting for
the U.S. Food and Drug Adminis-
tration to approve the medication
is excruciating.
“Every day, there’s damage
that can’t be undone,” she said.
Arroyo, a 2012 Blue Mountain
Community College graduate,
carries on despite her condition.
She expects to graduate from
Eastern Oregon University with
a teaching degree in spring 2016.
A special pump implanted in
her chest in 2013 gives her some
relief. The left ventricular assist
device “does 90 percent of the
heart’s job.”
Afterward the surgery “I was a
completely different person,” she
said. “For once, my extremities
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been gray from lack of oxygen.
Now they are pink. I have more
energy.”
Still, so much depends on
the approval of Eteplirsen. The
process, she said, moves at a
glacial pace while people with
Duchenne get sicker. Arroyo
wrote a letter to the FDA to remind
them that there are females with
Duchenne and encourage them to
expedite approval of the drug.
“Congress has given the FDA
the tools it needs to expedite the
approval of drugs like Eteplirsen
for patients just like me with
rare deadly disorders that have
no current treatment options,”
Arroyo said. “The Catch-22 for
the manufacturer of the drug, from
my perspective, is that while the
FDA has been slow to start using
the accelerated approval path-
ways, there are hundreds if not
thousands of Duchenne patients
like me hoping and praying to
wake up one day and read that
this drug has been approved.”
Arroyo communicates with
other Duchenne patients via
social media. She knows three
other females in Oregon who
have the disorder.
Last summer she met Scott
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home state of Alabama to allow
terminally ill patients access to
medicines that pass phase one
of the FDA approval process.
His 10-year-old son Gabe has
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team supporting two cyclists
riding across America to put a
spotlight on the disorder. One of
the cyclists, Michael Staley, is
a former congressional chief of
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The other, Wes Bates, a freshman
at Indiana State University, lost a
close friend to the disorder.
“It touched their hearts,”
Arroyo said. “They took the
summer off from work to ride
their bikes across the country and
raise awareness.”
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teers met Arroyo at Pendleton
City Hall when the team reached
Pendleton.
“They had never met a girl
with Duchenne,” she said.
She became friends with Staley
through social media, though she
hasn’t met him personally. Staley
encourages people to tell the FDA
what they think about drug devel-
opment by sending comments to
www.regulations.gov.
“The general public can help
Susie by writing to the FDA before
Aug. 10 and simply stating why
they believe a patient like Susie
Arroyo should be given access to
drugs like Eteplirsen,” he said.
In the meantime, the muscle
wasting continues.
“After becoming wheelchair
bound and eventually losing arm
function, most Duchenne patients
end up bedridden with breathing
tubes and loss of control of virtually
all bodily functions,” Staley said.
The FDA does have a process
to allow people to gain access
to experimental drugs called
“Compassionate Use.” Arroyo’s
doctor has initiated the process,
but it is long and challenging.
If Arroyo does get access to
the medication, she’s not worried
about side effects.
“There’s a lot of fear that this
is risky, that the drug will cause
adverse health problems,” Arroyo
said. “Honestly, Duchenne is
worse than any side effect could
be. I feel I should be able to
choose something that is poten-
tially good even though it could
make me sick.”
———
Contact Kathy Aney at
kaney@eastoregonian.com
or
call 541-966-0810.
SUMMER: Free books handed out
Continued from 1A
“We have different ways
that we fund different kids, but
the key thing is that any kid
can come,” Sipe said. “They’re
covering reading. They’re
covering writing. They’re
covering math. But they try
to do it in a way that is pretty
hands-on and very engaging.”
On Tuesday, students
who will be entering the
third grade this fall were
performing experiments on
gummy bears to see how the
different substances affected
the candy.
Jayden Vela said he
thought summer classes
would be boring, but after
attending, he enjoyed them.
Pedro Figueroa said he is
bored when he is not at
summer school.
The teachers try to make
learning a fun experience,
but Taylor said the education
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“The kids are having
a good time, but they are
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and math intervention, which
is what they need so you
don’t see a huge drop in their
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that people don’t realize about
Staff photo by Kathy Aney
Kids check out the new books they received Wednes-
day at McNary Heights Elementary School in Umatilla.
The Children’s Reading Foundation READ Up literacy
program provides free books each week paid for with
Ready 2 Learn grant dollars.
reading benchmarks is that
they are actually expected to
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summer with no instruction
whatsoever, and that’s just
almost impossible.”
Students are expected to
read 60 words per minute at
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year, she said, but 80 words
per minute by the beginning
of second grade.
Sipe said the district has
also been giving away free
books to encourage reading
through The Children’s
Reading Foundation READ
Up literacy program, which
is funded by a Ready 2 Learn
grant. She said children in
third grade and younger have
been given a new book each
week to encourage reading at
home.
A fresh batch of books was
handed out Wednesday after
the summer school session
that ends at noon. For the six
MEALS: Small fee for adults to eat
Continued from 1A
continues to grow. As word
spreads, more and more
people attend.”
Sipe said an average of
185 people eat breakfast,
250 eat lunch and 30 eat
dinner at the various sites.
Adults can also partake in
the meals for $1 for break-
fast and $2 for lunch or
dinner, she said.
“For the adults, that fee
simply recoups our cost, so
that we’re not misusing the
funds,” she said. “We have
to make sure that we’re only
feeding children for free, so
we are very careful about
that. It’s still a great way for
families to get out, go for a
walk, do an activity.”
Sipe said the meals also
provide a social opportunity
for families. McNary Heights
attendance secretary Natasha
Ugarte said many families
are joining in.
“My kids have dinner
during dinner time, and it’s
pretty successful,” she said.
“Full families come and eat,
and I’ve noticed them inter-
mingling with other families
and talking about school. It’s
actually pretty cool.”
The meals are served at
different times and locations
Mondays through Fridays.
Breakfast is served from
8-9 a.m. at McNary Heights
and from 8:30-9:30 a.m.
at Umatilla High School.
Lunch is served from 11:30
a.m. to 12:30 p.m. at McNary
Heights, the high school and
Kiwanis Park near McNary
Market. Dinner is served
from 4-5 p.m. at McNary
Heights.
students participating in the
science, technology, engi-
neering and math academy,
however, the educational
opportunities continued into
the afternoon.
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the district has been offering
its STEM academy during
the summer. For $10 per day,
she said the students have
the opportunity to further
their technical education by
studying topics such as the
moon and volcanoes.
McNary Heights atten-
dance secretary Natasha
Ugarte said the fee scares
many people away, but it
costs less than a babysitter.
“They pay a minimum of
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she said. “We’re a lot cheaper,
and they get educated.”
Sipe said students can still
register and participate in
the remainder of the STEM
academy. For more informa-
tion, call McNary Heights,
541-922-6650.
TAX CREDITS: Cost
state $986.1M in revenue
Wray referred other
questions
about the inquiry
pricing rules going back
to mid-2012, so deals that to the Secretary of State’s
violated the rules in place at RI¿FH
Tony
Green,
a
the time will be legitimate.
spokesman
for
the
Secre-
Business energy tax
credits issued from 2006 WDU\ RI 6WDWH¶V RI¿FH
to 2014 could cost the state declined to comment on
up to $968.1 million in any aspect of the auditor’s
tax revenue, according to work, including the timing
the Department of Energy. of the investigation and
A majority of that cost — what prompted it.
“As you know, the
$703.6 million — comes
Audits
Division has some
from tax credits that were
investigatory
responsibili-
sold to investors.
Although an auditor WLHVWKDWDUHFRQ¿GHQWLDOLQ
is conducting the investi- nature until resolution is
gation, it is not an actual reached,” Green wrote in
audit, according to energy an email Tuesday.
The Secretary of State’s
agency
spokeswoman
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Rachel Wray.
government
waste, fraud
“Those forms were
and
abuse
hotline.
Under
pulled because the Secre-
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some questions about our DQG WKH LQYHVWLJDWLRQ ¿QG-
processes,” Wray said LQJV DUH FRQ¿GHQWLDO XQWLO
Tuesday. “It is not an the agency completes the
inquiry.
audit.”
Continued from 1A
NOW OPEN
ON
SUNDAY!
Join us August 2nd
from 8 am - 2 pm to
l
Specia s celebrate our new
g
Savin
&
Sunday hours!
Door
!
Prizes
7x9 8’ Railroad Ties
First Foods Festival
and Race
$11.95*
*8/2/15 Only.
Limited to stock on hand.
– Formerly known as Salmon Walk
Saturday, August 1, 2015 • July Grounds
(73310 July Grounds Lane, Pendleton, OR 97801)
Race Events & Times
(Jackets and medals for 1st – 3rd place for hike,
10 K & 5 K race events)
7:10 am
Kanine Ridge Hike Departs July
Grounds
9:00 am
10 K Spawn Run
9:30 am
5 K Smolt Run
10:30 am Family Fun Walk & Cycle
(noncompetitive)
1st Annual Chumash
Lacrosse Tournament
Team Categories Grades
1st - 3rd, 4th - 6th, 7th - 8th, 9th - 12th & Adult
(Medals for Winning Team in Each Category)
8:00 am -10:15 am
Chumach Tournament
Begins
10:15 am - 12:00 pm Break for Family Fun Walk/
Race
12:00 pm - 2:30 pm Chumash Tournament
Continues
1-888-809-8027 ext. 7219 or
firstfoodsfestival@ctuir.org
Event Agenda
Race Registration Opens
Hikers Depart for Kanine Ridge Hike
LaCrosse Tournament Begins (Game
Times 8 -10 am & 12:00 - 2:30 pm)
8:15 - 9:40 am Yoga Stretch & Breath
9:00 am
10 K Spawn Run
9:30 am
5 K Smolt Run
10:00 am
First Foods Info Booths Open
10:30 am
Family Fun Walk & Cycle
(Noncompetetive)
11:30 am
BBQ Fundraiser Lunch
12:00 pm
Awards Ceremonies for Race Events
1:00 pm
First Foods Contest
2:30 pm
Festival and LaCrosse Tournament
Ends
6:45 am
7:10 am
8:00 am
Sponsors: CTUIR Department of
Natural Resources
CTUIR Department of Education
CRITFC
Yellowhawk Health Clinic
Wildhorse Resort & Casino
Cayuse Technologies
City of Umatilla
Contributed photo
Susie Arroyo, a Pendleton woman who
has Duchenne Muscular Dystrophy,
met up with Scott Griffin as he traveled
through the country supporting the Ride-
4Gabe bicycle tour named for his son,
who has Duchenne. The pair poses last
summer with Pendleton Mayor Phil Houk
(right) in front of the Hope for Gabe mo-
torhome in the city hall parking lot.
PENDLETON
432 Southeast Dorion
(541) 276-6221
www.tumalum.com
Weekdays 7 am - 5:30 pm
Sat. & Sun. 8 am - 2 pm