On March 31, 2014, FAMSOD and Flowers for Anaphylaxis Outreach hosted the inaugural worldwide Love Remembers Day, commemorating and celebrating lives lost to food-induced anaphylaxis. Recently, we spoke to FAMSOD and Flowers for Anaphylaxis founder and director Aleasa Word about her organizations and the upcoming second annual Love Remembers Day event.
MKFA: Please tell us about FAMSOD and Flowers for Anaphylaxis and the connection between the two.
Aleasa: FAMSOD started out as a grassroots support group in Delaware. The acronym stood for the Food Allergic Multicultural Society of Delaware. It is now the Food Allergic Multicultural Society of Diversity. The reason for this name change is that I noticed disparities in the way people of different ethnicities and cultures were treated when it comes to how they eat and the food allergies they have.
For example, a family of Italian descent who may eat lots of pasta and cheese may have more difficulty navigating dairy or wheat allergies than other families, and if not accompanied by a strong family support structure, caregivers of these food-allergic children have more challenges. Also, families of Indian descent are seeing allergies to fenugreek, a staple spice for them, which has caused conflicts within families. I’ve coached many families on this.
Flowers for Anaphylaxis, an all-volunteer outreach effort, was born out of the FAMSOD mindset. I realized that when families—who may have already felt different or alienated—lose loved ones to food-induced anaphylaxis, the once-familiar food allergy community begins to feel foreign because their personal circumstances have changed. I wanted them to know that I understand this is a different type of grief and loss. We lose lives over food, and that is very difficult to comprehend. But as a community, I felt it was our obligation to see them through every stage of the food allergic journey, even those that result in loss of life.
Both organizations are now online. The mission of Flowers for Anaphylaxis is to lend grief support to families who have lost members to food allergy-induced anaphylaxis or have suffered brain injury. I create custom cards with logos from support groups all across America and Mexico to send to the families. If I know about funeral services in advance, I send flowers. As of late, my daughter has been making keepsake bracelets to send along with the cards and a list of condolences from support group leaders.
Aleasa: My daughter was diagnosed with 11 food allergies at 13 months old. Not really knowing anything about food allergy except for avoiding pine nuts, which I was allergic to, and not having many resources, I used my own research background to find help. I joined a group and then worked as a walk coordinator for a national charity but found better results in creating my own entity to help local families. I’ve done charity work since I was in 5th grade, and I’ve always felt bad for people having a hard time. So I wanted to help.
MKFA: Please tell us about the upcoming second annual Love Remembers Day event and what kinds of activities will take place.
Aleasa: In 2014, I was beta testing the event. I’d moved to Atlanta and felt disconnected from my community but knew I needed to expand my efforts. This year, I’ve formed a committee consisting of parents, legacy parents and social media and graphic design specialists to help out. Held the last weekend of March, it’s actually a two-day event, allowing people of all faiths, family structures and even those with non-traditional work schedules to participate. We’ll have Twitter chats, balloon releases and podcasts, and we’re looking to do a virtual summit as well as offer downloadable posters.
MKFA: Who can get involved in Love Remembers Day and how?
Aleasa: To get involved with Love Remembers Day, people can contact me through the Flowers for Anaphylaxis website or email me at firstname.lastname@example.org. We’re looking for people who want to provide in-kind donations for Twitter giveaways and to sponsor the Trailblazer awards.
MKFA: What are the Trailblazer awards?
Aleasa: The Trailblazer awards are service awards dedicated to those who have gone above and beyond to further the cause of raising awareness and saving lives in the food-allergic community. The Legacy Trailblazer award will go to a parent, caregiver or family member of someone who lost the battle to food allergies but continues the fight in their name. The Advocate Trailblazer award will go to someone actively in the journey of a food-allergic life who’s trying to pave a better path for both his or her own family as well as for the rest of us through outstanding service.
MFKA: What other future plans and goals do you have for FAMSOD and Flowers for Anaphylaxis?
Aleasa: In 2015, I’d like to take Flowers for Anaphylaxis from a grassroots organization to a formal entity. The reason being is that I want to create an assistance fund for hospital and burial costs for families who are grieving injury or loss of their loved ones. I’ve seen too many people have to go to crowdfunding, only to be disappointed because the community is unsure if the accounts are legitimate. This leaves families with large bills and hinders their ability to grieve in a healthy way.