Familial Chylomicronemia Syndrome Foundation Launches National Campaign to Urge Industry and Regulators to Find a Path Forward for Treatment

Monday, December 10, 2018 General News
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Program invites patients, families and clinicians to share perspectives on their hopes and goals for the future with the FDA and leaders in research to find a treatment

SAN DIEGO, Dec. 10, 2018 /PRNewswire/ -- The FCS Foundation, the nation's leading advocacy and support organization for

people affected by familial chylomicronemia syndrome (FCS), today announced the launch of a new national campaign to build broader awareness of the need for a treatment for FCS and to encourage regulators and leaders in research to work to bring a treatment to patients as quickly as possible. Through the program, people affected by FCS in the U.S. will be encouraged to share their feelings about the impact a treatment would have on their lives and their futures.

"In just the past few months we have gone from having no hope for a treatment to having the potential to bring a treatment to people living with FCS soon. We are making progress, and at this stage it is critical for researchers and industry to continue the effort and for the FDA to review the data and weigh that against the devastating and often life-threatening impact of FCS on patients," said Melissa Goetz, co-founder of The FCS Foundation. "More than ever, we need to make our feelings heard and let them know that we demand a treatment."

The FCS Foundation campaign called "What are you thankful for?" invites FCS patients as well as family members, friends, clinicians, caregivers and industry contacts to prepare a message of hope and gratitude about their experience with FCS and the need for a treatment. They are then invited to share those messages along with a photo with the contacts at the FDA who are reviewing treatments for FCS and with the leadership at Akcea Therapeutics who have been leading research to develop a treatment. In addition to forwarding messages to the FDA and Akcea, participants are also encouraged to post their messages on their own social media platforms and to invite others to join the effort.

"FCS is a rare disease, and so we need every voice possible to join in this effort. We must let the FDA and the research community know that we need a treatment and that they should consider the impact of this terrible disease on our lives when they review any new therapies that could help us," said Lindsey Sutton, co-founder of The FCS Foundation and an FCS patient.

In addition to the "What are you thankful for?" campaign, The FCS Foundation is also reaching out to patients in the U.S. to get them to encourage their doctors to voice their support for a treatment for FCS. The Foundation will also send the results of an online petition supported by more than 12,000 people calling for a path forward for an FCS treatment. For more information about the petition, visit https://www.change.org/p/u-s-food-drug-fda-denies-the-only-treatment-for-fcs-patients. In December 2018, representatives from The FCS Foundation will also meet with representatives from the FDA to discuss the recent decision to decline approval for WAYLIVRA™, currently in development at Akcea Therapeutics as a treatment for FCS.

About the Familial Chylomicronemia Syndrome FoundationFounded in 2016, The FCS Foundation's mission is to establish a global support network to promote advocacy and education for patients and caregivers living with FCS. The FCS Foundation is the only foundation dedicated to patients suffering from familial chylomicronemia syndrome. For more information, visit: www.livingwithfcs.org.

Media Contacts:Melissa Goetz, Co-President, FCS Foundation(518) 593-1794melissagoetz@livingwithfcs.org

Lindsey Sutton, Co-President, FCS Foundation(619) 925-0867lindseysutton@livingwithfcs.org

Cision View original content:http://www.prnewswire.com/news-releases/familial-chylomicronemia-syndrome-foundation-launches-national-campaign-to-urge-industry-and-regulators-to-find-a-path-forward-for-treatment-300762262.html

SOURCE The FCS Foundation



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