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eNewsletter June 2017
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Lipoprotein A Email Template

June Newsletter 2017

NEWS

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Lipoprotein(a) in the public eye.

Bob Harper, former "Biggest Looser" trainer and national TV celebrity, made dramatic appearances on the Dr. Oz Show, The Today Show and Rachel Ray Show to raise awareness of the benefits of hands-on CPR.  In the course of his Dr. Oz interview he mentioned that his heart attack was due to genetics - high Lipoprotein(a). Thank you Bob for sharing your story, more here

At the NHLBI In D.C., a strategic objective

The Lipoprotein(a) Foundation participated in a The National Heart, Lung, and Blood Institute (NHLBI) working group (WG) on Future Research Directions on Lipoprotein(a) and Cardiovascular Disease in Bethesda, Maryland to evaluate the state of the art of Lipoprotein(a) (Lp(a)) research and the roles of Lp(a) in cardiovascular disease, to identify research gaps and barriers, and to recommend future research opportunities in Lp(a) research. The Foundation is grateful to the researchers involved in the process and to the patient advocates, Justin, Tiffany, Sandra and their families, who shared their video stories as part of this meeting.  The warm reception at the NHLBI for the patient voice encouraged our representative, more here.


Image(Photo L to R: Dr. Keith Ferdinand, Sandra Tremulis  MBA - Lipoprotein(a) Foundation CEO, Dr. Gissette Reyes-Soffer, Dr. Lijuan Liu - NHLBI, Dr. Joe Witztum, Dr. Santica Marcovina, Dr. Marlys Koschinsky, Dr. Sam Tsimikas, Dr. Raul Santos, Dr. George Thanassoulis, Dr. Henry Ginsberg, Dr. Patrick Moriarty, Dr. Simhan Danthi - NHLBI and Dr. Michelle Olive - NHLBI)                


American College of Cardiology 2017

The Lipoprotein(a) Foundation exhibited in Washington D. C. at the American College of Cardiology (ACC) annual scientific sessions. Pictured to the left is Sandra Tremulis, Founder and CEO of the Lipoprotein(a) Foundation with Dr. Sam Tsimikas, a member of the Foundation's Scientific Advisory Board (SAB) and one of the leading researchers in Lipoprotein(a).  He is one of many SAB members we met with at the meeting.   We thank them all for volunteering with the Foundation and their research.  Our SAB listing here.       

Justin's story - Lipoprotein(a) and Stroke

We are grateful every day for our incredible advocates around the world.  We are so thankful to Justin and his family for sharing his story about stroke and high Lp(a) in support of stroke month.  This young man's NFL draft dreams were taken away by a massive, life-threatening ischemic stroke and his only risk factor was high Lp(a).  See more of Justin's incredible story here.  Please "share" and "Like" his story on Facebook and Twitter to help Justin educate and empower other patients and save lives.  Justin's story received television coverage on Fox 5 News here.


    

Plasma Apheresis and Lipoprotein(a)

The Lipoprotein(a) Foundation attended the International Society For Apheresis meeting, held in Copenhagen, Denmark.  Pictured to the left is Dr. Tina Khan who is a cardiology specialist registrar at Imperial College, London, United Kingdom.  You can see more about Dr. Khan's Lp(a) apheresis randomized, controlled, cross-over trial she presented at the meeting here. 

Mission Moments

"Thank you so much for your advocacy for people with high lp (a). 19 years ago, when my husband had a heart attack and was found to have high lp(a), it was difficult to find any information about it. Without proven drug therapies doctors seem to shrug their shoulders, prescribed statins with a low fat diet and exercise, and wished us good luck. Now, thanks to your leadership, we can tell our kids help is on its way so they won't suffer their father's cardiac problems. Thank you!"

RESOURCES

Physician resources here

Patients and family member resources 
here
         
What's Next

Make sure to check for eNews in the coming weeks as we launch our new SocialLink (Facebook style) community interface within our web site for registered  members.  We hope this provides our members a private  patient-owned location to share information and inspiration, if you are not already registered on our web site, register here.

Thank you for your continued support and we invite you to consider ways you can get involved with the Lipoprotein(a) Foundation.  We welcome your story, your energy and your ideas!


Stay in touch on Facebook and Twitter. To receive the Foundation updates, sign up for the Lipoprotein(a) Foundation eNews here.


Find Lp(a) resources and support at www.TESTLpa.org   

RESEARCH UPDATES

Stroke and Lipoprotein(a): Facts and Supporting Research - Infographic here

In recent years, stroke incidence and hospitalizations have increased more than 40 percent among younger individuals from 25 to 44 years of age. 

1 in 5 people globally have inherited high Lipoprotein(a) - 63 Million in the U.S. - are at increased risk of heart disease and stroke.

High Lipoprotein(a) is currently the strongest monogenetic risk factor for coronary heart disease and aortic stenosis. 

Highly heritable, if one parent had an ischemic stroke before 65, the children have 3X the risk of suffering a stroke as well. 

An ischemic stroke patient with high Lp(a) has a 10X greater risk of having a repeat stroke. 

Lipoprotein(a) concentrations can be measured by a simple blood test, taken once in a person's life, and could be the first step in preventing up to 120,000 heart attacks and strokes every year.  Infographic here

Clinical Studies on Stroke and Lipoprotein(a) see here


Current Clinical Trials on Lipoprotein(a) recruiting patients

Effect of Lipoprotein(a) Elimination by Lipoprotein Apheresis on Cardiovascular Outcomes (MultiSELECt) (Study location in Germany) more here

Phase 2 Study of ISIS 681257 (AKCEA-APO(a)-LRx) in Patients With Hyperlipoproteinemia(a) and Cardiovascular Disease (Study location in US) more here       

SPONSORS





Thank you to our newsletter sponsors.  For information about sponsorship opportunities, please contact:
serevill@lipoproteinafoundation.org


ABOUT LIPOPROTEIN(A) FOUNDATION
The Lipoprotein(a) Foundation (www.TESTLpa.org) is a California-based, patient-founded, nonprofit patient advocacy organization whose mission is  to prevent cardiovascular events and deaths due to high Lipoprotein(a) by revealing this inherited risk for cardiovascular disease; educating and empowering patients and saving lives. We pursue this mission to save lives by increasing awareness, advocating for routine testing, and supporting research that will lead to a specific treatment for high Lipoprotein(a).

If you do not wish to receive The Lipoprotein(a) Foundation eNewsletter updates, please click "unsubscribe" below.
The Lipoprotein(a) Foundation
809 Laurel Street, P.O. Box 460
San Carlos, CA 94070
serevill@lipoproteinafoundation.org



       

 
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809 Laurel Street
San Carlos, CA 94070
650/995.3242