HCMA Begins NEW "HCMA Champion" Program
The HCMA Champion Program: The HCMA wants to empower you in your own community to raise awareness, change legislation and raise funds for HCM research and to assist HCM families in need. Each of us possesses a unique prospective on HCM and each has significant value. Are you an affected person, is your family affected by HCM, is your friend? Did you lose a loved one, friend or co-worker to HCM? Are you a business owner who has employees who may be impacted? Are you a medical professional caring for those with HCM or simply shocked at the lack of knowledge within the medical community about HCM? Are you a teen or young adult who knows the power of social media? It really does not matter WHO you are it only matters that you have a big heart and want to help save and improve the lives of those with HCM.
What is an HCMA Champion?
To participate as an HCMA Champion you agree to act in a positive and professional manner when representing the HCMA. You will be asked to complete reports explaining where you will be participating in an event or visits, the scope of the event or visits, the location, time, demographics of the event and outcomes. You must participate in online training programs prior to participating in events in the name of the HCMA. Information disseminated must be consistent with the HCMA’s views, positions, mission, vision and objectives. Any funds raised during events must be reported within 72 hours of the event and submitted in a timely manner to the home office of the HCMA.
Champions will be responsible for ensuring that all regional, state and local documentation is complete prior to an event. In the event permits are needed Champions must work with HCMA home office to ensure all documents meet with local laws.
The Program is broken into two sub-sections, Legislative Champions and Awareness Champions; you may participate in one or both.
Your goal will be to help change laws that impact those with HCM and/or at risk for HCM. You will write letters, sign on to letters, visit lawmakers at local and state levels to discuss why changes need to be made and you will, at times, be asked to present information to legislative committees as opportunities present themselves. While acting as an HCMA Champion you must have a full understanding of the HCMA’s positions on issues and participate in conference calls and educational programs (most via the internet) to ensure your complete understanding of these issues PRIOR to representing the HCMA.
Matters that we will be addressing in the next 2-3 years include AED placement, CPR Training, Good Samaritan coverage for AED and CPR use, Risk assessment for all children, health care access, research funding and improved screening programs to identify those at risk (athletes and otherwise).
Your goal will be to help elevate the awareness of HCM in a number of ways. You will be asked to identify opportunities in your community where you can talk about HCM including, health fairs, community events, sporting events, and media. You will participate in training programs to educate you on the HCMA’s position on a number of topics PRIOR to representing the HCMA. You will also be responsible for raising funds in your community. Fundraising must be done to pay for the materials that will be distributed; these do not have to be grand huge fundraising events (although we like those too!).
A kit of awareness tools including fact sheets, posters and pop up display is about $100.00 per 50 participants.
A team leader: You will be responsible for organizing state events and acting as a contact point for the HCMA home office, local media and communicating to team members. The team leader will work with the Administrative assistant to ensure all filings are in place prior to any events and communicate with the Home office should any documentation or filings be needed. Further the team leader will ensure that all members are performing duties in a manner consistent with the HCMA’s mission, vision and objectives and maintain a professional and cordial manner with other team members, law makers and the community. In the event the team leader finds a team member has not upheld these principles he/she is to communicate the issue with HCMA CEO and discuss how to remedy the situation.
A fundraiser: You will be responsible for creating and running programs in your state and local area. You will communicate with the HCMA home office for materials and documentation for events. You will communicate with your states team leader to seek assistance from other Champions in your region.
A Youth advisor (helping teens run events): The HCMA has many teen champions who will need some guidance and extra help in organizing and motivation. Those who agree to work with teens must be prepared to have a complete background check (which will include having to complete a detailed document regarding your work and personal history).
A team member: You will work under the direction of the team leader and participate in events and perform duties as assigned. Duties may include but are not limited to sharing your story with law makers, participating in a fundraising event, working a booth at a health fair, explaining HCM to members of the public or similar items.
Administrative assistance (each state will require some filings - you will work with the HCMA office to ensure all documents for your state are in order): Each state has different documentation that must be completed prior to running specific types of activities in your state. The HCMA would like to maintain consistent with all local and state laws when running events. The Administrative assistant for each state will be required to identify what we must file for in each state or municipality and work with the Home office to ensure all documentation and fees are appropriately paid and filed.