FH Advocates for Awareness
The Advocates for Awareness program is part of an FH educational campaign that focuses on community outreach and strives to raise awareness of this vastly underdiagnosed and untreated disease. Advocates are individuals with FH who have been trained to share their stories and important messages about screening, early detection and treatment of familial hypercholesterolemia. On their own, or in partnership with a local medical expert, FH Advocates reach out to hospitals, clinics, worksites, places of worship, and other local organizations to distribute educational materials, give presentations, conduct special events, or encourage the media to cover FH stories.
Join Us and Share Your Story!
As a FH Foundation Patient Advocate, you will make a significant difference in the lives of other individuals with FH by advocating on their behalf and encouraging more people to join the Foundation to strengthen our voice. You will help accomplish this by:
- Creating partnerships with health professionals to present your perspective as a person living with the disease to enhance the traditional medical education experience and to help overcome misperceptions and barriers to early recognition and early treatment of FH.
- Educating fellow patients and members of the community to increase awareness of the disease and the need to screen family members as well as to encourage membership in the FH Foundation.
- Organizing and speaking at local community events (such as the Rotary Club, faith-based groups, health fairs, etc.) and with the media, distributing articles and other educational materials and being prepared to answer non-medical questions.
- Building relationships with state and federal politicians and government agencies through letters and meetings.
What is expected of me if I want to become a FH Foundation Advocate?
1. Attend the Advocate Training Meeting on June 21-22, 2013 in Amelia Island, FL as well as monthly teleconferences (at least four times per year).
2. Become an active FH Advocate in your community. After you’ve been trained, you can choose to do one or more of the following:
- a. Speak to health professionals, the media and the community, often in group settings. The FH Foundation staff will help you schedule events in your area such as presentations (often in participation with a lipid specialist), health fairs, and media outreach to educate your community. To support your efforts, we will also provide a Community Action Kit and materials. Each Advocate is expected to organize or participate in at least 3 activities or events within one year of participating in a training meeting.
- b. Distribute resource materials such as brochures to local clinics, hospitals, community centers, etc.
- c. Participate in the FH Mentor program, which will connect you to other individuals with FH and/or their caregivers to provide peer support via phone, e-mail or in-person.
- d. Participate in FH Foundation focus group meetings or surveys to provide valuable insight and feedback that will help the organization further refine educational materials, tools and resources.
***Overnight and air travel may be needed to carry out the above activities. The FH Foundation will pay for all relevant, pre-approved expenses such as materials, travel, meals and accommodations.
Who may apply to become an ADVOCATE?
Individuals who have Familial Hypercholesterolemia (FH), or a child/children with FH, or both.
The FH Foundation is committed to a diverse membership, and encourages individuals of all ages, racial and ethnic backgrounds, native languages, and income and education levels, to apply. If you commit to volunteering as an Advocate, you will be asked to agree to the criteria for participation, which can be found at the bottom of this page.
After completing the application, you will be asked to participate in a telephone interview. Participants are selected as an Advocate based on the strength of their application, including relevant life experiences, volunteer history, and/or recommendations. Racial and ethnic diversity and geographic location are also considered.
Advocate Training and Speakers Bureau
We ask each Advocate to join the Foundation’s Speakers Bureau. To do so, each volunteer is required to participate in a weekend Advocate Training Meeting June 21-22, 2013 in Amelia Island, FL. This is your opportunity to meet other volunteers and the leadership, receive a comprehensive orientation to the Foundation, learn the medical aspects of FH and heart disease from lipid specialists and participate in one-on-one coaching on how to tell your personal story in a compelling manner. This in-depth training experience is intended to elevate your personal medical expertise and strengthen your public speaking skills to be able to communicate effectively with health professionals and lay-people alike.
The FH Foundation Advocate for Awareness Participant Criteria
* Have Familial Hypercholesterolemia (FH), or a child/children with FH, or both.
* Participate in the FH 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.
* Attend at least 4 Advocate teleconferences in a 12-month period.
* Be willing to travel within a designated area, which may require an overnight stay and/or air travel. (*Approved expenses will be paid by The FH Foundation.)
* Provide resources regarding FH to patient and medical community.
* Participate in speaking engagements in front of health professionals, FH patients, and/or the general public.
* Maintain and check a working e-mail address at least once a week. * Submit timely quarterly reports on all volunteer activities and participate in an evaluation of the program.
* Be available for training and mentoring new Advocate volunteers, if requested.
* Have no agenda of his/her own and agree to help individuals with FH and their families, especially those who are newly diagnosed.
* Sign a non-disclosure clause that prohibits providing information to anyone, other than another FH Foundation Advocate or staff, about individuals or families they are in contact with, except with the express consent of those individuals or families.
* Agree to utilize the discussion forum, once activated, on The FH Foundation website at www.thefhfoundation.org.
* Encourage individuals with FH to enter data into and allow information about themselves to be published in the CASCADE FH Registry for the benefit of others, as well as a method of statistical data-gathering.
* Agree to have name, email and phone number published for the information of other Advocates on The FH Foundation website.
* Be able to physically and mentally execute the duties of an Advocate as described above.