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Lipoprotein(a) Foundation Named Top-Rated Nonprofit

Friday December 20, 2019

Foundation Recognized for its Efforts to Prevent Premature Cardiovascular Disease due to High Lipoprotein(a), Reaching more than 110,000 People per Year in more than 160 Countries

 

SAN CARLOS, Calif. — The Lipoprotein(a) Foundation was recently named a Top Nonprofit of 2019 by GreatNonprofits, the leading platform for community-sourced stories about nonprofits. The Foundation received the award based on successfully achieving critical objectives on its 5-year strategic plan focused on preventing premature cardiovascular disease and death due to high Lipoprotein(a), sometimes known as Lp(a), by educating and empowering patients.

The Lipoprotein(a) Foundation was nominated for the Top-Rated Nonprofits award when Katherine Grigg Knight of Mahwah, New Jersey submitted the following testimonial:

“The Lipoprotein(a) Foundation has helped save my life! It was the beginning of my journey, guiding me through what I needed to test to identify what ended-up being significant heart disease. February of 2019 is when I found the Lipoprotein(a) Foundation, and in June of 2019, I had two angioplasty procedures and six stents. I went from thinking I was a healthy, active 56 years old to realize that I wasn’t. From the outside, I am fit and always took care of myself, so looks as we know can be deceiving. The Lipoprotein(a) Foundation has provided me with the guidance I need to push for testing that saved my life! Subsequently, my husband, sister and all three of my children had an Lp(a) blood test and we all have high levels of Lp(a). So, this Foundation has reached my whole family, and the life-saving impact branches out far greater than just me.”

Approximately 63 million people in the U.S. have inherited high Lp(a) and it is currently the most prevalent inherited risk factor for coronary heart disease and stroke. Unfortunately, for many people, the first sign of a dangerously high Lp(a) is a heart attack or stroke. Although a simple blood test can reveal high levels of Lp(a), it is not included in most standard lipid panel tests that check cholesterol levels. According to a recent study, traditional cholesterol tests miss approximately 125,000 people in U.S. every year who have a cardiovascular event and whose only risk factor is high Lp(a).

The Lipoprotein(a) Foundation was founded in 2013 by Sandra Revill Tremulis, who, at 39, discovered that she was on the verge of a fatal heart attack with a 95 percent blockage of her coronary artery despite a lifetime of physical fitness, following a healthy diet and exercising regularly, including running marathons. It was after that near fatal event, Tremulis discovered that she had very high levels of Lp(a).

“This motivated me to find out more about this dangerous condition that affects millions of Americans. What I discovered was a widespread lack of awareness of Lp(a), which led me to start the Lipoprotein(a) Foundation with the mission to empower patients and prevent cardiovascular events due to high Lp(a) through proper testing and diagnosis. Our goal is to save lives by increasing awareness, advocating for routine testing, and supporting research that leads to a specific treatment for elevated Lipoprotein(a),” said Sandra Revill Tremulis, founder of Lipoprotein(a) Foundation.

According to Tremulis, the Foundation has made tremendous progress advocating for the 1 billion people globally, who are living with high Lp(a) and at increased risk for cardiovascular disease. Some of the foundation’s activities have included:

  • Generating awareness and providing support to over 110,000 visitors from 166 countries who have visited www.TESTLpa.org annually created to provide evidence-based educational materials for patients and physicians
  • Conducting the first patient support summit in California and capturing the patient voice.
  • Helping to connect thousands of patients with doctors specializing in high Lp(a).
  • Creating a global Scientific Advisory Board with the world’s leading cardiologists, researchers, and lipid specialists.
  • Developing a Strategic Research proposal with the NHLBI for high Lipoprotein(a).
  • Developing a contact registry to support with research and assisted with rapidly enrolling two clinical trials for the development of a therapy for high Lp(a).
  • Securing ICD-10 Diagnosis codes for elevated Lp(a) and a family history of elevated Lp(a) generating awareness and data for research.
  • Advocating for high Lp(a) to be included in the AHA/ACC, NLA, and EAS/ESC guidelines as an independent genetic risk factor for cardiovascular disease with recommendations for testing.
  • Creating national public awareness with a N.Y. Times article and significant social media presence as a recognized source for quality information about high Lp(a).
  • Advocating for and representing the Lp(a) patient community at a NHLBI working group meeting with key stakeholders to assist with the standardization of the Lp(a) blood test.

“We are very proud to be recognized by GreatNonprofits as a Top-Rated Nonprofit based on what the Foundation has accomplished in its first five years of advocacy and educational outreach,” added Tremulis. “This life-saving work has been enabled by philanthropic donations from industry and individual donors, and we hope that, through continued support we will build on this and work to bring more patients and researchers together to empower families to advocate for testing and support the development of treatments for elevated Lp(a).”

To date, several companies are working on therapies to lower Lipoprotein(a) levels and conducting clinical trials to determine whether reductions in Lp(a) will lower CVD risk: prevent heart attacks, strokes, and other CV events. For example, a Phase III clinical trial, sponsored by Novartis Pharmaceuticals (Clinicaltrials.gov identifier: NCT04023552), is expected to kick off in early 2020 to test TQJ230 in patients with established cardiovascular disease and elevated Lp(a). In addition, there are several other companies now developing potential therapies to lower high Lp(a), including Amgen, Kaneka Pharma America LLC, Abcentra, and Silence Therapeutics. Giles Campion, MD Ph.D., Chief Medical Officer and Senior Vice-President, Research and Development at Silence Therapeutics stated, “Our company is keen to work with the Lipoprotein(a) Foundation to provide input into our development program to understand patient needs.”

For more information about the Lipoprotein(a) Foundation or to donate, visit: www.TESTLpa.org.

About the Lipoprotein(a) Foundation

Because approximately 63 million Americans have high Lipoprotein(a) and are at risk of premature cardiovascular disease (CVD) and death, the vision for the Foundation is: To live in a world where high Lipoprotein(a) is routinely diagnosed, treated, and families are screened. The mission is to prevent CVD events and death due to high Lipoprotein(a) by diagnosing this inherited risk factor early in life, educating and empowering patients with high Lp(a), and having health providers aggressively treat other CVD risk factors in patients with high Lp(a). Our goal is to save lives by increasing awareness, advocating for routine testing, and supporting research that will lead to a specific treatment for elevated Lipoprotein(a). Based in San Carlos, California, the Lipoprotein(a) Foundation is a patient-founded, 501(c)3 nonprofit research and advocacy organization.