Anne C. Goldberg, MD, FACP, FNLA
Washington University Medical School
St. Louis, MO
James M. Falko, MD, FNLA
University of Colorado
Don P. Wilson, MD, FNLA
Cook Children's Medical Center
Fort Worth, TX
Ann M. Liebeskind, MD, FAAP, FNLA
Mobile Health Team Lipids Clinic
Wenter Blair Anderson
Alan S. Brown, MD, FACC, FAHA, FNLA, FASPC
Midwest Heart Specialists
Michael H. Davidson, MD, FNLA
The University of Chicago Pritzker
School of Medicine
Linda C. Hemphill, MD, FNLA
Massachusetts General Hospital
Penny Kris-Etherton, PhD, RD, FNLA
Penn State University
University Park, PA
Joyce L. Ross, MSN, CRNP, CLS, FNLA
University of Pennsylvania Health System – Retired
West Chester, PA
Ronald A. Codario, MD, EMBA, FACP, FNLA
Hospital University of Pennsylvania
Robert A. Wild, MD, MPH, PhD, FNLA, FASPC
Oklahoma University Health Sciences Center
Lori A. Alexander, MSHS, RD, CCRC, CLS, FNLA
Jacksonville Center for Clinical Research
Matthew K. Ito, PharmD, CLS, FNLA
Mary P. McGowan, MD
Dartmouth Geisel School of Medicine
James A. Underberg, MD, MS, FACPM, FACP, FNYAM, FASPC, FNLA
New York University
New York, NY
Paul E. Ziajka, MD, PhD, FNLA
Florida Lipid Institute
Winter Park, FL
Lindsay W. Hart
Information Systems Specialist
The Foundation of the National Lipid Association (Foundation) was formed in 2008 to serve as an education and research organization in the field of clinical lipidology. Built on the groundwork of our predecessor, the Florida Lipid Foundation, the Foundation has turned its focus to providing education and materials to help patients and their families manage and overcome lipid problems. The Foundation Board of Directors met in January 2017 to discuss the goals, strategy, and revised direction of the association. The discussions at this meeting led to a new mission, vision, and values that the Foundation will now emphasize moving forward:
To improve the welfare of patients and families affected by cholesterol and triglyceride problems.
Supporting patients and families with cholesterol and triglyceride problems with education, awareness, and advocacy in order to decrease suffering and death. The Foundation supports the initiatives of the National Lipid Association.
A steady source of funds is essential to the continued viability the Foundation. You can help by making a donation to the Foundation. Take a moment now to invest in the future of our organization. Your donation will help support professional outreach and education and promote public awareness of critical issues in public health.Donate Now
Lipid specialists reduce deaths related to high cholesterol and other lipid disorders. It is the goal of lipid specialists to enhance the practice of lipid management in clinical medicine and to reduce the morbidity and mortality associated with atherosclerotic disease. The specialty of "lipidology," a multidisciplinary branch of medicine focusing on lipid and lipoprotein metabolism and their associated disorders, is still in its infancy and continues to evolve with the field of medicine as a whole.
The most common disease treated by lipid specialists is hyperlipidemia, an excess of lipids in the blood. These are most often low-density lipoprotein cholesterol (LDL-C) and triglycerides. Certain disorders result in specific imbalances, such as:
The density of lipids and the type of protein that contains them ultimately determines their impact on the body and its metabolism. In western societies, most lipid and lipoprotein disorders result from risk factors such as diet and amount of physical activity. Less common are genetic disorders that result in lipid imbalances.
Lipid specialists primarily treat, or specialize in the treatment of, persons with disorders or disruptions in the amount of lipids in the blood (dyslipidemia). Lipids are fats and normal levels are required for good health. Abnormally high or low lipid levels can lead to illness and cardiovascular disease, including arterial blockage, heart attack, and stroke. A lipid specialist has extended training and expertise in the diagnosis and treatment of dyslipidemias, and may prescribe drug therapy, changes in diet, and lifestyle modifications as needed to help patients achieve and maintain good health. Lipid specialists may be physicians who concentrate on preventive cardiology or endocrine disorders, some work in allied professions such as pharmacology or dietetics. Increasingly, these kinds of specialists are forming lipid clinics so that patients can be treated by a professional team of medical doctors, nurse practitioners, pharmacists, and dietitians who collectively treat dyslipidemias from the entire spectrum of medicine.
The The Foundation was established from the former Florida Lipid Foundation, whose founder, Paul Ziajka, MD, PhD, FNLA, created a Florida entity to serve the needs of the community of lipidologists. The National Lipid Association was interested in forming a national entity to address the issues broadly and approached the Florida Lipid Foundation to rename and broaden its scope of activities. The new board formed in December 2008 as the Foundation of the National Lipid Association and is the charitable counterpart to the National Lipid Association.
This year's Miami Nights Gala at the Scientific Sessions in Aventura, Florida was a great success, raising $27,710 for the Foundation of the National Lipid Association's important patient resource and health awareness initiatives.
The money was raised through ticket sales and generous donations from National Lipid Association members.
Attendees of the event and The Foundation also donated items of need to the Miami Rescue Mission, which has provided emergency shelter, job training, healthcare, employment opportunities for homeless men and women, and help for at-risk youth since 1922.
The 3rd Foundation of the NLA Clinician/Educator award was also presented to Robert S. Rosenson, MD from Mount Sinai Icahn School of Medicine. The award, made possible by the Aaron & Lillie Straus Foundation, is awarded annually to an NLA member who demonstrates continued excellence in clinical care of patients with lipid disorders and/or excellence in education in the field of clinical lipidology.
WAYLIVRA is the only therapy for Familial Chylomicronemia Syndrome, or FCS, a devastating, ultra-rare disease
BOSTON, Mass. and CARLSBAD, Calif., May 7, 2019 (GLOBE NEWSWIRE) – Akcea Therapeutics, Inc. (NASDAQ:AKCA), an affiliate of Ionis Pharmaceuticals, Inc., and Ionis Pharmaceuticals, Inc. (NASDAQ:IONS), announced today that WAYLIVRA has received conditional marketing authorization from the European Commission (EC) as an adjunct to diet in adult patients with genetically confirmed FCS and at high risk for pancreatitis, in whom response to diet and triglyceride lowering therapy has been inadequate.
This authorization follows the positive opinion recommending approval provided by the Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA). Click here to view the EC’s decision. As part of the conditional marketing authorization, Akcea and Ionis will conduct a non-interventional post-authorization safety study (PASS) based on a Registry.
FCS is an ultra-rare debilitating disease that can be life-altering. It is caused by impaired function of the enzyme, lipoprotein lipase (LPL), which results in significant risk and disease burden, including unpredictable and potentially fatal acute pancreatitis as well as chronic complications due to permanent organ damage. It is estimated that there are between 3,000 to 5,000 people living with FCS worldwide, with approximately 1,000 people living with FCS in Europe.
WAYLIVRA is an antisense oligonucleotide drug designed by Ionis and co-developed by Akcea and Ionis to reduce the production of ApoC-III, a protein that regulates plasma triglycerides. WAYLIVRA is a self-administered, subcutaneous injection in a single-use, prefilled syringe.
The Foundation of the National Lipid Association made great progress in 2018. Fueled by a reinvigorated mission statement established in 2017, the board and our supporters worked harder than ever to continuously improve the quality of our initiatives and resources, collaborate with like-minded organizations, and recognize the much-needed research of healthcare providers and researchers in our field aiming to close gaps in patient care.
The Foundation of the NLA partnered with Health First Community Health Center to provide free LDL-C, TG, and A1C screenings to 21 people in rural Dixon, KY on September 29, 2018. Foundation board member Joyce Ross, MSN, CRNP, CLS, FNLA attended the screening to provide counsel and interpretation assistance to the participants after they received their test results.
Fifty-nine percent of Health First’s patient population has an income level below 100% of the federal poverty level, and 23 percent has an income level below 200% of the federal poverty level.
The Foundation plans to support several more screenings hosted by Health First to reach over 200 more Kentucky residents in 2019.
TORONTO (June 12, 2018) – Jonathan C. Cohen, PhD, and Nabila G. Seidah, PhD, each received a 2018 National Lipid Association/Foundation of the NLA Akira Endo Award for Achievements in the Development of Treatments to Prevent Atherosclerosis at the XVIIIth International Symposium on Atherosclerosis opening ceremony on Saturday, June 10 for their research that led to the development of PCSK9 inhibitors.
NLA President Alan S. Brown, MD, FNLA, Immediate Past President James A. Underberg, MD, MS, FNLA, Past President W. Virgil Brown, MD, FNLA, and board member Ernst J. Schaeffer presented the awards.
Cohen is a C. Vincent Prothro Distinguished Chair in Human Nutrition Research at UT Southwestern in Dallas. His research focuses on the genetic basis of metabolic disorders that contribute common diseases such as heart disease and fatty liver disease. Together with his scientific partner, Dr. Helen Hobbs, he has identified genes that play major roles in the metabolism of fats, cholesterol and triglycerides, and elucidated the biological roles of their protein products. His laboratory showed that loss-of-function mutations in PCSK9 are associated with low plasma levels of cholesterol and confer protection from coronary heart disease. In addition, the Hobbs-Cohen laboratory identified the first genetic cause of nonalcoholic fatty liver disease in humans.
Seidah is Director of the Biochemical Neuroendocrinology research unit at the Montreal Research Clinical Research Institute, a Professor in the Department of Medicine at the University of Montreal and Adjunct Professor in the Divison of Experimental Medicine at McGill University. His research focuses on a family of nine mammalian protein convertases (PCs): PC1, PC2, Furin, PC4, PC5, PACE4, PC7, SKI-1 and PCSK9. Seidah's team concentrates on the active mechanism and regulation of these enzymes, identifying their substrates and potential inhibitors. The goal of advancing their understanding of the physiological roles they play in cells and in mice is to develop clinical implications, as in the case of PCSK9. The team uses a broad range of techniques: protein and peptide biochemistry, enzymology, molecular and cell biology, proteomics and genetics. The lab possesses a unique collection of mutants and has completed full and/or conditional knockouts on PC5, Furin, PC7 and PCSK9.
Named for Japanese biochemist Akira Endo, who is recognized for his work in the discovery of statins, the award was established in 2015 and is presented at each triennial ISA. Harry R. “Chip” Davis, PhD, received the inaugural Endo Award at ISA in 2015 for his leadership in guiding the development of a unique and clinically valuable lipid-lowering drug, ezetimibe.
This year's Dinner Gala & Silent Auction at Scientific Sessions in Las Vegas was a smashing success, raising more than $20,000 for the Foundation of the National Lipid Association's important patient awareness initiatives.
The money was raised from a silent auction that included sports memorabilia, jewelry, fine wines, vacation getaways and more. Entertainment was provided by NLA President Alan S. Brown, MD, FNLA and his band, This End Up.
The inaugural Foundation of the NLA Clinician/Educator award was also presented to Neil J. Stone, MD, FNLA. The award, made possible with the support of the Aaron & Lillie Strauss Foundation, is awarded annually to an NLA member who demonstrates continued excellence in clinical care of patients with lipid disorders and/or excellence in education in the field of clinical lipidology.
National Lipid Association Board Member Lori Alexander, MSHS, RD, CCRC, CLS, FNLA testified on Wednesday, May 10th in front of the Food and Drug Administration Endocrinologic and Metabolic Drugs Advisory Committee on behalf of familial chylomicronemia patients.
"For people with FCS, trying to adhere to an ultra-low to no-fat diet is the only treatment they currently have," Alexander said during her testimony. "Treatment with volanesorsen offers hope to these people, many who have been struggling for years without medical therapy."
Read coverage of the hearing from NLA Media Partner, Rare Disease Report.
On May 26, 2017, clinical lipidology and the Foundation lost a great friend and advocate - Dr. Ralph Michael Vicari died at the age of 64. At the time of his death he was Vice-President of the Foundation, a fellow of the NLA and a practicing cardiologist/lipidologist in the Melbourne, Florida area. He was an advocate for children’s health, contributed greatly to the Foundation, and his inviting presence at all NLA and Foundation functions is only the beginning of his extensive contribution to the field of lipidology.
September is National Cholesterol Awareness Month, a good time to get your blood cholesterol checked and take steps to lower it if it is high. National Cholesterol Awareness Month is also a good time to learn about lipid profiles and about food and lifestyle choices that help you reach personal cholesterol goals. You can Find a Lipid Specialist who can help you make a plan of action and learn more about how to lower your cholesterol.
Adopted January 20, 2017
Section 1.The name of the organization shall be the Foundation of the National Lipid Association, Inc. in these bylaws referred to as the "Foundation".
Section 1. The purpose and objective of the Foundation shall be to operate exclusively for charitable, scientific and educational purposes solely within the exemption provided for by 26 U.S.C.A., Internal Revenue Code, Section 501(c)(3), and the amendments thereto, namely:
(a) To promote the study of lipidology and to seek to advance the specialty
(b) To conduct cultural and educational activities that will best carry out its purpose.
(c) To serve as a medium of communication between the Foundation and the public.
(d) To elevate the standards of training and education in lipidology.
(e) To provide a means through which the Foundation may cooperate with other professional and civic groups concerned with the lipid health of citizens
(f) To have all of the powers conferred upon corporations organized under the Florida Not for Profit Corporation Act
Section 1.An annual business meeting shall be held at a time and place to be determined by the Foundation's Board of Directors for the purpose of electing officers, members of the Board, and for the transaction of such other business as may come before the meeting.
Section 2.Special meetings of the board members may be called at any time by the President at such person's discretion or upon written request made by at least one half (1/2) of the members of the Board upon written request.
Section 3.One quarter (1/4) of the Board of Directors of the Foundation shall constitute a quorum for the transaction of business at Annual, regular, or special meetings of the Corporation.
Section 4.Written notice of the place and time of any meeting shall be sent via U.S. mail by the Secretary to each Board member of the Foundation at the member's last known address as it appears on the records of the Foundation, not less than thirty (30) days prior to the Annual Meeting, or not less than ten (10) days prior to any special meeting of the Foundation.
Section 1.The affairs of this Foundation shall be managed by a Board of Directors ("Board"), in accordance with these Bylaws.
Section 2.The members of the Board of Directors shall consist of no less than nine (9) and no more than fifty (50) individuals, all of whom must be an individual substantially involved in supporting the mission of the Foundation.
Section 3.In the event of the death, resignation, or termination of a director, the Board shall have the authority to appoint a director to complete the unexpired term of the outgoing director.
Section 4. Board members shall serve terms of two years, to begin and end during the Annual Meetings, and shall be eligible for reelection. At least half the terms of Board members shall expire each year. Board members shall be nominated and elected by the Board of Directors.
Section 1.The officers of the Foundation shall be the President, Immediate Past-President, Vice President, Secretary, and Treasurer.
Section 2.All officers shall be nominated from existing board members and elected by the board present at the Annual Meeting. Nominations for any offices must be received at the Corporation's office no later than sixty (60) days prior to any such annual meeting.
Section 3.Officers shall serve a term of one year, to begin and end during Annual Meetings, and are eligible for re-election.
Section 4.The Board of Directors shall appoint an Executive Director.
Section 1. The President shall:
A. Be Chairman of the Board of Directors.
B. Preside at all regular and special meetings of the Foundation and the Board.
C. Fill all vacancies for Directors and Officers.
D. Act as official liaison to the National Lipid Association
E. Perform all such other duties as may be assigned from time to time by the Board
Section 2.The Vice President shall:
A. Perform the duties of President in the absence of the President.
B. Perform all such other duties as may be assigned from time to time by the Board.
Section 3.The Secretary shall:
A. Be responsible for the keeping of the minutes of the meetings of the members and of the Board; said minutes to be kept in one or more books provided for that purpose.
B. Be responsible for sending all required notices.
C. Be responsible for the custody of all corporate records and the Seal of the Foundation.
D. Conduct the general correspondence of the Foundation, as directed by the President.
Section 4.The Treasurer shall:
A. Be responsible for all funds and securities of the Foundation from any source whatever.
B. Be responsible for the deposit of all such monies in the name of the Foundation in such depositories as shall be selected by the Board.
C. Collect all dues.
D. Create and keep all necessary financial records.
F. Submit an Annual Statement to the membership during the Annual Meeting, Be bonded in such sums and with such surety or sureties as the Board shall, from time to time, determine.
Section 5.The Immediate past-President shall:
A. Perform duties as assigned by the President.
Section1.The Board may authorize any person, in addition to the Officers authorized by these Bylaws, to enter into any contract or execute or deliver any instrument in the name of and on behalf of the Foundation, and such authority may be general or confined to specific instances.
Section 2.All funds of the Foundation shall be deposited to the credit of the Foundation in such banks, trust companies, or other depositories as the Board may select.
Section 1.The Foundation shall keep complete and correct books and records of account and shall also keep minutes of the proceedings of meetings of its members and Board, and shall keep at its principal place of business a record of the names and addresses of all members.
Section 1.The fiscal year of the Foundation shall be the calendar year.
Section 1.The Seal of the Foundation shall contain the name of the Corporation, as well as its date and State of incorporation.
These Bylaws may be altered, amended or repealed and new bylaws may be adopted by a two-thirds vote of the Board of Directors present at any regular meeting or at any special meeting of the Board of Directors.
Section 1.Upon dissolution of the corporation, all of the assets thereof, after the payment of all debts, shall be distributed to such non-profit organizations as are qualified as tax-exempt pursuant to 501(c )(3) of the Internal Revenue Code, with preference being given to any such organization whose purposes are consistent with those of the Corporation.
Section 1.Robert's Rules of Order shall govern the proceedings of all meetings of the Board and of the Foundation in all cases not provided for in these Bylaws.