Community focuses on elevating awareness of the burden of FCS and impact on daily living
BOSTON, Nov. 02, 2018 (GLOBE NEWSWIRE) -- Akcea Therapeutics, Inc. (NASDAQ:AKCA), an affiliate of Ionis Pharmaceuticals,
Inc., today recognizes the inaugural Familial Chylomicronemia Syndrome (FCS) Awareness Day on November 2, 2018. FCS Awareness Day,
which will occur annually on the first Friday in November, is a global observance to build broader awareness of the challenges
associated with the disease.
“We are very proud to recognize the first global FCS Awareness Day along with all members of the FCS community around the world.
As we advance our research and understanding of FCS, this historic event is another symbol of how far the community has come in
recent years,” said Molly Harper, VP, Global Head & Franchise General Manager of Akcea Therapeutics.
Familial chylomicronemia syndrome (FCS) is an ultra-rare, devastating hereditary disease that causes unpredictable and
potentially fatal acute pancreatitis, chronic complications due to permanent organ damage, and a severe impact on daily living. It
is estimated that there are between 3,000 to 5,000 people living with FCS worldwide.
“With the creation of an FCS Awareness Day, patients, caregivers and families have a new platform and opportunity to share their
stories and to help others learn about FCS,” said Alan Gilstrap, executive director, advocacy and policy at Akcea. “We have had the
privilege of hearing from so many patients about their experiences. Their stories highlight the continuing challenges that
FCS presents every day and we are continuing our commitment to the lipid and FCS communities. Our hope is that more patients and
caregivers can connect with each other, as we now know there are several benefits that connectivity can provide in FCS.”
In July, Akcea announced results of the CONNECT study providing many first-time assessments of the benefits of patient
connectivity in FCS. Results showed a range of benefits when patients and caregivers connect in person or online, including
improved perceptions of overall health, disease outlook, motivation to take care of health and emotional well-being. The study also
found that connecting with other patients can positively impact the quality of life for people living with FCS.
“As part of the global FCS community, we are so pleased to recognize the first FCS Awareness Day, which is a great reflection of
our mission to build awareness and provide support while also advocating for research that will lead to a treatment for FCS,” said
Lindsey Sutton, co-president of The FCS Foundation. “As someone who knows personally how devastating FCS can be, I hope this day
serves as a way to educate others about the symptoms and burden of the disease. Living with FCS can often feel isolating, and our
goal is to help all patients realize that they are not alone in dealing with the challenges brought on by FCS.”
The FCS Foundation, along with members of the global FCS Community, invite patients, caregivers, clinicians, friends and family
to participate on social media using hashtags #FCSAWARENESSDAY, #ACTIONFCS and #LIVINGWITHFCS.
ABOUT FCS
FCS is an ultra-rare disease caused by impaired function of the enzyme lipoprotein lipase (LPL) and characterized by severe
hypertriglyceridemia (>880mg/dL) and a risk of unpredictable and potentially fatal acute pancreatitis. Because of limited LPL
function, people with FCS cannot breakdown chylomicrons, lipoprotein particles that are 90% triglycerides. In addition to
pancreatitis, FCS patients are at risk of chronic complications due to permanent organ damage, including chronic pancreatitis and
pancreatogenic diabetes. They can experience daily symptoms including abdominal pain, generalized fatigue and impaired cognitions
that affect their ability to work. People with FCS also report major emotional and psychosocial effects including anxiety, social
withdrawal, depression and brain fog. There is no effective therapy for FCS currently available. Additional information on FCS is
available at www.fcsfocus.com, and through the FCS Foundation at http://www.livingwithfcs.org and the LPLD Alliance at www.lpldalliance.org. For a full list of organizations supporting the FCS community worldwide,
please click here.
ABOUT AKCEA THERAPEUTICS, INC.
Akcea Therapeutics, Inc., an affiliate of Ionis Pharmaceuticals, Inc., is a biopharmaceutical company focused on developing and
commercializing drugs to treat patients with serious and rare diseases. Akcea is advancing a mature pipeline of six novel drugs,
including TEGSEDITM (inotersen), WAYLIVRATM (volanesorsen), AKCEA-APO(a)-LRx,
AKCEA-ANGPTL3-LRx, AKCEA-APOCIII-LRx, and AKCEA-TTR-LRx, all with the potential to treat multiple
diseases. All six drugs were discovered by and are being co-developed with Ionis, a leader in antisense therapeutics, and are based
on Ionis’ proprietary antisense technology. TEGSEDI is approved in the U.S., E.U. and Canada. WAYLIVRA is under regulatory review
for the treatment of familial chylomicronemia syndrome, or FCS, and is currently in Phase 3 clinical development for the treatment
of people with familial partial lipodystrophy, or FPL. Akcea is building the infrastructure to commercialize its drugs globally.
Akcea is a global company headquartered in Boston, Massachusetts. Additional information about Akcea is available at www.akceatx.com.
FORWARD-LOOKING STATEMENT
This press release includes forward-looking statements regarding the business of Akcea Therapeutics, Inc. Any statement
describing Akcea’s goals, expectations, financial or other projections, intentions or beliefs is a forward-looking statement and
should be considered an at-risk statement. Such statements are subject to certain risks and uncertainties, particularly those
inherent in the process of discovering, developing and commercializing drugs that are safe and effective for use as human
therapeutics, and in the endeavor of building a business around such drugs. Akcea’s forward-looking statements also involve
assumptions that, if they never materialize or prove correct, could cause its results to differ materially from those expressed or
implied by such forward-looking statements. Although Akcea’s forward-looking statements reflect the good faith judgment of its
management, these statements are based only on facts and factors currently known by Akcea. As a result, you are cautioned not to
rely on these forward-looking statements. These and other risks concerning Akcea’s programs are described in additional detail in
its quarterly report on Form 10-Q and other documents, which are on file with the SEC.
In this press release, unless the context requires otherwise, “Akcea,” “Company,” “we,” “our,” and “us” refers to Akcea
Therapeutics.
Ionis Pharmaceuticals™ is a trademark of Ionis Pharmaceuticals, Inc. Akcea Therapeutics™, TEGSEDI™ and
WAYLIVRA™ are trademarks of Akcea Therapeutics, Inc.
Akcea Investor Contact:
Kathleen Gallagher
Vice President of Communications and Investor Relations
(617)-207-8509
kgallagher@akceatx.com
Akcea Media Contact:
Bill Berry
Berry & Company
T: 212 253-8881
bberry@berrypr.com
Lynn Granito
Berry & Company
T: 212 253-8881
lgranito@berrypr.com
![Akcea Logo.jpg](https://resource.globenewswire.com/media/d52f8c24-24e8-465c-b5c3-0b865ee49824/small/akcea-logo-jpg.jpg)
![](http://www.globenewswire.com/newsroom/ti?ndecode=NzA2NDAjNzQyMzA4NA==)