Become an Advocate for Awareness
How You Can Become an FH or Lp(a) Advocate for Awareness
If you are interested in learning how to become an advocate for those with FH or elevated Lp(a), we invite you to apply. As a participant you will learn how to share your story. Early, accurate diagnosis and treatment can give a person with FH and or/ elevated Lp(a) the chance to live a full life. But more than 80% of people with FH are unaware of their diagnosis, and fewer than 1% of Americans have ever been screened for high Lp(a). This means entire families who are at risk for early heart disease and stroke have no idea of their risk. You can be a part of the solution.
We are seeking applicants who are individuals with FH or elevated Lp(a) or family members interested in improving the quality of life for all patients. Experience, strength in advocacy, public speaking and good writing skills are desirable. Applicants must also be supportive of the Family Heart Foundation’s mission.
As an Family Heart Foundation Advocate for Awareness, I represent that I:
- Have Familial Hypercholesterolemia (FH), elevated Lipoprotein(a) (Lp(a)), have a family member with FH or elevated Lp(a), or both.
I agree that as a Representative of the Family Heart Foundation, to the best of my ability, I will:
- Participate in the Family Heart Foundation Advocate Training Program.
- Serve as an Advocate in this program for a minimum period of 1 year and organize or participate in at least 3 activities or events within 1 year of participating in the FH Advocate Training Program. Activities or events may include, for example, public speaking, working on a project, giving an interview, or writing a story for the website.
- Coordinate my FH or Lp(a) awareness activities with Family Heart Foundation staff and forward all inquiries from media or other organizations to the Family Heart Foundation.
- Attend at least 4 Advocate teleconferences in a 12-month period.
- Be willing to travel within a designated area. For some opportunities this may require an overnight stay and/or air travel. (*Approved expenses will be paid by the Family Heart Foundation.)
- Provide resources regarding FH or elevated Lp(a) to patient and medical communities.
- Participate in speaking engagements in front of health professionals, individuals with FH or elevated Lp(a), and/or the general public.
- Maintain and check a working e-mail address at least once a week.
- Submit timely reports following any volunteer activities and participate in an evaluation of the program.
- Be available for training and mentoring new Advocate volunteers, if requested.
- Respect the privacy of others by not providing information to anyone, other than Family Heart Foundation staff, about individuals or families I am in contact with, except with the expressed consent of those individuals or families.
- Encourage individuals with FH to join the CASCADE FH® Patient Registry for the benefit of others, as well as a method of statistical data gathering about FH.
- Not represent a commercial entity related to FH or elevated Lp(a) treatment, for example as an Ambassador for a pharmaceutical company's program, while an Family Heart Foundation Advocate.