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Lipoprotein a Foundation

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Nonprofit Overview

Causes: Health, Heart & Circulatory System Diseases & Disorders, Voluntary Health Associations & Medical Disciplines

Mission: To prevent premature cardiovascular disease and death due to high Lipoprotein(a) by revealing this inherited lipid risk for premature cardiovascular disease; educate and empower patients and save lives.

Results: Developed Strategic Research proposal with the NHLBI for high Lipoprotein(a) [Lp(a)] after three years of advocacy. Developed contact registry to assist with research. Assisted with rapidly enrolling two clinical trials for the development of a therapy for high Lp(a). Advocated for three years and secured ICD-10 Diagnosis codes for elevated Lp(a) and family history or elevated Lp(a) generating awareness and data for research. Advocated for high Lp(a) to be included in the AHA/ACC, NLA and EAS/ESC guidelines acknowledging it as an independent, genetic risk factor for cardiovascular disease and recommendations for testing. All these guidelines now include it. Advocated with the NY Times for three years resulting in National public awareness in the NY Times article in the Science Section. Plus developed a significant social media presence and become a recognized source for quality information about high Lp(a). Conducted the first support patient summit in California and captured the patient voice. Held the first Hope Gala in Chicago with 82% of attendees giving it very high approval ratings. Generating awareness and providing support to over 100,000 visitors from 166 countries by creating an educational web site for patients and physicians educating on high Lipoprotein(a) featuring the best evidence-based data to date. Helping 1000's of patients connect with a doctor who specializes in high Lp(a). Have some of the worlds leading cardiologists, researchers and lipid specialists on our Scientific Advisory Board. Spoken globally at major Scientific Meeting to generate awareness for high Lp(a). Generated awareness with the physician community at multiple events over the last 2 years. Have thousands of patients, family members, physicians and researchers registered on web site.

Target demographics: 1 in 5 Americans who have inherited high Lipoprotein(a) and are at risk from early heart disease and stroke

Direct beneficiaries per year: over 100,000 individuals who visited our website from 166 countries

Geographic areas served: The United States of America

Programs: education, empowerment and advocacy

Community Stories

15 Stories from Volunteers, Donors & Supporters

Katherine Grigg K.

Client Served

Rating: 5

the Lipoprotein a foundation has helped save my life! it was the beginning of my journey in 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 group and June of 2019 I had two angioplastys and 6 stents. I went from thinking I was a healthy and active 56 year old to realizing that I wasn’t. From the outside I am fit and always took care of myself so looks as weKnow can be deceiving. The lipoprotein a foundation has provided me with the guidance I needed to push for testing that saved my life! Thank you especially to the founder, Sandra, who even offered me an opportunity to speak to her. she cares very much and her dedication to this cause has made a difference in my life and my family’s life. Since February of this year all 3 of my children have been tested and my sister and husband and ALL of us have elevated Lipoprotein a. So this foundation has reached my whole family and the life saving impact branches out far greater than just me.

Comments ( 1 )

serevill Katherine, thank you for sharing your story, we are truly moved and glad we were able to help your family. Wishing you health and happiness always!

1 Tom W.2

Client Served

Rating: 5

A relative few of 'us' even get diagnosed for high LPa. Even fewer of us find the resources to begin treatment. This site provides current and ongoing information for treatment resources, facilities and practitioners who are equipped to manage LPa. I reference the Foundation with the Cardiologist I see along with the Endocrinologist. I have printed research articles from the site on several occasions or get reference info to forward to them. Apart from that aspect, consumers can gather to commiserate on treatment, care, resources, insurance and the like.
The photo is me going through apheresis for LPa removal.

Comments ( 1 )

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serevill 10/04/2019

Tom, thank you for sharing your very personal journey with high Lp(a) and your photo. A picture is worth a thousand words and to know you do this procedure every two weeks and endure 2 hours plus of plasma apheresis and probably have to travel to get to this site is humbling. This is the reason we started the foundation to find answers for our families and ease the burden and anxiety for the families.

1

Client Served

Rating: 5

When I found out I had elevated Lipoprotein(a), I was so happy to find this non profit. It gives accurate information about this condition and creates a place where patients can connect with each other.

Comments ( 1 )

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serevill 10/04/2019

Thank you we are so glad to be able to help you on this journey. Wishing you health and happiness.

1

General Member of the Public

Rating: 5

This has been a wealth of information. My family has a history of heart disease and dying very young, and because of the information I received here I was tested and found that I have very high LPa. LPa is the ONLY risk factor I have and I knew nothing about it.

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serevill 10/04/2019

Thank you Sparkles, wishing you health and happiness always!

Cynthia S.3

Donor

Rating: 5

Sandra Revill Tremulis started this nonprofit because she and her family have very high lipoprotein a levels which has caused them to have very serious health problems.

Currently, the majority of physicians, patients, healthcare workers, etc. are not aware of lipoprotein a and the serious health conditions it causes such as kidney disease, heart attacks, strokes, etc. Lipoprotein a is hereditary and currently there are very few ways to lower it. More studies are needed to find ways to lower this potentially dangerous protein.

Sandra through her foundation is making people aware of this protein and how dangerous it can be. This foundation has all of the most recent findings, DNA findings, testings, studies, etc. on their facebook group.

Comments ( 1 )

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serevill 10/04/2019

Thank you Cynthia for sharing your story and we are glad we could help. These are exactly the reasons we started the foundation. Wishing you health and happiness!

Professional with expertise in this field

Rating: 5

I am a scientist with a Ph.D. in pharmacology. I met the founder at an American Heart Association event -- after I had a quintuple bypass. Two of my 3 children also have elevated Lp(a) levels. Thus, I am both a scientist that is interested in Lp(a) biology and an individual with a strong personal motivation to facilitate advances in treatment of Lp(a).

The Lipoprotein A Foundation is a group with an exceptional founder, Sandra Revill Tremulis, and an equally impressive scientific advisory board composed of scientific experts in lipoprotein(a) biology. Sandra has been amazingly focused and provides strong leadership. I consider her an outstanding role model and the Foundation a wonderful resource for both the patient community and for the physicians that treat the affected individuals.

Approximately 1/5 of the population has increased risk of atherosclerosis due to elevated Lp(a) levels, but most do not know it. This group provides robust educational and emotional support for individuals who have recently found that they have high Lp(a) levels, whether this occurs before or following a cardiac event. Through the advocacy efforts of the Foundation, an ICD-10 code has been developed to facilitate testing and treating elevated Lp(a) levels. The Foundation has raised awareness of the gravity of this condition and built interest in the pharma community to address the condition. We have progressed in the last couple of years from having only plasmapheresis as an effective means of lowering Lp(a) levels to having several new drugs in the development pipeline, at least one of which has been shown to lower Lp(a) levels by up to 90% with biweekly or monthly injections. These drugs are entering phase II and III clinical trials, and the most recent trial (Novartis phase III) will seek to test the efficacy of its drug in >40,000 subjects worldwide. This development can be directly linked to the efforts of the Lipoprotein(a) Foundation.

Beyond advocacy and education, the Foundation provides a forum for interested individuals to share experiences, frustrations and triumphs. Critically, there are often discussions that wander toward pseudo-science. The forum is effective at reminding the participants of the evidence based medicine that guides its mission, and gently discourages propagation of non-evidence based treatments and theories.

Comments ( 1 )

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serevill 10/04/2019

David, thank you so much for sharing your experience with the foundation. Thank you also for the work you do!

Lauren Wells H.

Client Served

Rating: 5

Well researched and current information on a newly discovered issue relatively speaking .

Tiffany Ackerman P.

General Member of the Public

Rating: 5

This foundation is a life saver, literally!! Everyone needs to know about the lpa foundation

Comments ( 1 )

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serevill 10/04/2019

Tiffany, you are one of our heros! Thank you for sharing your video story on our web site www.lipoproteinafoundation.org Wishing you health and happiness always!

Previous Stories

General Member of the Public

Rating: 5

The LPa foundation is extraordinarily amazing. The founder Sandra has reached out to me personally many times and I have learned so much from her. To be diagnosed with high LPa is very scary, especially when you don’t have a clue what it is. This foundation is extremely educational and it benefits everybody.

Comments ( 1 )

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serevill 10/04/2019

Thank you for your comments. I represent the Lp(a) community and our families to achieve our mission of living in a world where high Lp(a) is routinely diagnosed, treated and family screened. Wishing you health and happiness always! There are truly mission moments for us!

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George S.3

Client Served

Rating: 5

The Lipoprotein Foundation gets 5 stars from me. I have gathered most of my information about Lp(a) from this foundation. There is a history of heart attacks at young ages (less than age 50). My doctor knew little about it but tested me on my request. Mine is high, very high. Thanks to this Foundation I am well versed and understand Lp(a), they have answered questions that my Dr. was not able to. I have donated several times, a fair traded for the information that I have received.

Comments ( 1 )

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serevill 10/04/2019

George, thank you for your continued support. We aspire to educate, empower and save lives with our mission. Wishing you health and happiness always!

General Member of the Public

Rating: 4

I was just diagnosis with Cardiac Heart Disease and had a Heart Cath., on 02/14/19, I had a blockage of 85% so my docotor placed a Stent in....this is all so new to me. I just started Cardiac Rehab also. My Primary doctor ordered the Lipoprtein (a) I was shocked that I resulted extremely high! Wow! I researched yesterday and found this Foundation, very thankful, I need all the Information I can get to help me through this new life journey..........Thank you.....

Comments ( 1 )

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serevill 10/04/2019

You are so welcome. This is a mission moment for us and why we do what we do.

1

Professional with expertise in this field

Rating: 5

As a clinical lipid specialist this is my go-to site for patient education and continuing education for providers.

Comments ( 1 )

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serevill 10/04/2019

Thank you for your professional support, it is truly appreciated.

Client Served

Rating: 5

Sandra goes above & beyond to help people & raise awareness. She found us doctors that were knowledgeable in LPa, helped us get appointments, shared diet & supplement information & met with us personally when we were in California. Helping people is her passion & it shows! Thanks Sandra!!

Comments ( 1 )

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serevill 10/04/2019

Thank you! Our mission is to prevent cardiovascular disease and death due to high Lp(a); educate and empower families and save lives.

1

Professional with expertise in this field

Rating: 5

I am a researcher in this field and have been for 6 years. This organization is one that actively brings together the top minds in the clinical and research areas in order to bring the most recent information and awareness to those afflicted with Lp(a) and to the general public. This foundation has significant potential in helping to advance our knowledge of Lp(a) in disease.