Meet the FH Foundation Advocates!
FH: A Common Disorder, An Uncommon Diagnosis
The FH Foundation’s Advocates for Awareness Program aims to recruit volunteers who can represent us by sharing their experiences with FH and helping others through their own journeys.
- Are you or any of your family members affected by Familial Hypercholesterolemia?
- Are you interested in finding out how you can raise awareness of this life-threatening but manageable condition in your local community?
- Would you like to take action and use the story of your FH journey to help others through theirs?
If the answer is “Yes,” we invite you to APPLY to become a volunteer!
As a volunteer for the FH Foundation, you can decide what role you would like to play: participate in educational outreach to raise awareness of FH among health professionals and the general public, connect with others to provide support, distribute FH materials locally or all of the above!
There are many other opportunities to get involved and spread the word:
- Become an Advocate for Awareness and present your FH story to the community
- Serve as a mentor to other individuals with FH and caregivers
- Arrange a local support group and lead teleconferences or online discussions
- Deliver educational brochures and materials to local clinics and hospitals
- Email support to a newly diagnosed patient in your area
- Provide a charitable donation or arrange a local fundraiser
The FH Foundation Advocates for Awareness™ Program
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?
- Attend the in-person Advocate Training Meeting (date and location TBD) as well as quarterly teleconferences.
- Become an active FH Advocate in your community
- 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 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 FH Foundation online 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 accommodation.
Who may apply to become an ADVOCATE?
Individuals who have Familial Hypercholesterolemia (FH), or a relative/caregiver of someone who has it.
The FH Foundation is committed to a diverse membership, and encourages individuals of all ages, genders, 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 viewed by clicking here.
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. 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.