You can help us help the ENTIRE Li-Fraumeni syndrome community! Note, these are not in order of importance - every volunteer, in any capacity, has the ability to make a huge difference. Contact us if you can help in any of the following ways:
Writers, videographers, and photographers: Do you enjoy writing and sharing videos or photos your individual or family experiences with LFS? Do you like interviewing other people about their LFS life? Volunteer to document these experiences for the Living LFS blog, emails, and social media. Telling and showing these personal patient stories is how we most effectively raise awareness of Li-Fraumeni syndrome.
Video editing: We have hours of footage of Living LFS events that need to be shaped into engaging videos for social media, website, and YouTube for use in awareness-raising, community communications, and fundraising.
WordPress website development, particularly the Elementor website builder: Your skills and experience in this area will be a huge help in growing and maintaining LivingLFS.org.
Email marketing and contact relationship management (CRM): We use Network for Good/Bonterra, but your experience with Mailchimp, Zoho, Hubspot, Salesforce/Pardot, or any other related software can help us keep our patient, supporter, and clinician communities connected and up to date on Living LFS’ activities, and keep us updated on them, too.
Cancer center relationship management: You can help us maintain and update our list of cancer centers around the world that focus on, or have experience with, LFS. Regularly contact cancer centers on behalf of Living LFS to confirm their current information and contacts. Mail the centers copies of our informational rack card, available in 6 languages. This helps us keep the LFS community connected with critical care from knowledgeable clinicians.
Google Ads management: Your experience successfully managing Google Ads campaigns or related advertising efforts will help Living LFS update and maintain our existing campaigns to spread the word about Li-Fraumeni syndrome and our patient support initiatives.
Fundraising and donor management: Living LFS’ work is 100% volunteer, and 100% supported by donations. Your experience in fundraising, grant writing, identifying new potential donors, and nurturing existing donors can help ensure the success of our most critical Living LFS programs, like biannual LFS Hardship Grants and the biennial Jennifer Mallory Family Camp.
Events committee: Speaking of family camp, we have a small group of committed volunteers who work hard to make camp happen. We also present LFS Adult Getaway events, we periodically send delegates to important conferences such as Rare Disease Week on Capitol Hill, and we facilitate regional meetups. Each of these events has MANY moving parts, and your passion and experience can make them run smoothly.
LFS Hardship Grant applicant management: Our LFS Hardship Grants program grows every year, with more applicants to vet and more funds to distribute. By calling applicants on behalf of Living LFS to confirm details or flesh out their applications, you can help ensure the funds provided by our donors are distributed responsibly. The most gratifying part is making calls to applicant recipients in each grant round to let them know financial help is on the way.
Facebook support group management: Our private groups on Facebook are the lifeblood of our patient-to-patient and family and friends support for LFS life. Your experience with Facebook support group management can ensure that eligible new members are admitted to the group promptly, and that bad actors and inflammatory threads are managed quickly and efficiently.
YOUR skill or experience: What are you passionate about doing that can benefit the LFS community, that we haven’t listed here? Let us know and let’s see how it fits into our programs!
Note: any costs incurred as a part of volunteer efforts, such as postage, printing, etc, must be approved in advance by Living LFS in order to be reimbursed.
What you get in return:
The most fulfilling return on your investment of your time and expertise into Living LFS is the opportunity to serve our patient community. This helps us all!
But also:
Acknowledgement on the Living LFS website
Experience for your resume. We will happily provide letters of recommendation to prospective employers for anyone who capably volunteers for Living LFS
Potential volunteer board member position. Those with the initiative and passion to successfully and capably perform the activities they volunteer to undertake may be considered for membership on the volunteer Board of Directors for Living LFS.
Please reply to this email and let us know where you would like to get started, and any details about your relevant experience. Thank you again for volunteering - we look forward to having you on the Living LFS team!
