We would rarely use the word ‘Fair’ or 'Fare' to describe people with a life threatening, autoimmune disorder. However, in the case where F.A.R.E. stands for Food Allergy Research Education, it is a great word to use as a charitable organization that is viewed as the nation’s leading authority on food allergies which supports 15 million diagnosed with this disease known as Food Allergy. We will introduce some of these people in the slideshow, Faces of Food Allergies, and share stories below, in this article.
”Many often mistake food allergies as less severe than they really are because of the word ‘Allergy, ” says John Lehr, CEO of FARE who along with Veronica LaFemina, Vice President of Communications, have devoted their daily lives the FARE organization. FARE is a non-profit organization which is primarily funded by those suffering with food allergies as well as the mothers, fathers, grandparents and friends of those with this disease. It is very much a grassroots 501(c)(3) organization.
“Right now is a critical time in the national discourse around food allergies. This is a growing public health issue that affects 1 in 13 children and sends someone to the Emergency Room every 3 minutes. No matter how old you are or where you live, chances are you know someone with this life-altering disease. We, as a country, need to take this seriously. By partnering with FARE, you are helping us advance food allergy education and research so we can save lives,” says LaFemina.
Any time is a great time to give a donation to FARE, a new organization that was formed in 2012 as a result of the merger of two legacy organizations; FAAN (Food Allergy & Anaphylaxis Network) and FAI (Food Allergy Initiative) that focused on education and research of food allergies. The result of the merger is F.A.R.E which brought together a new group of people to help with the 4 aspects of the mission; education, research, advocacy, and awareness.
Most people in the organization are somehow impacted by this disease, as in the case of Mr. Lehr whose nephew suffers with food allergies and Ms. LaFemina whose father was diagnosed in the 1960’s and sister was recently diagnosed.
Research and reports from FARE suggest the top two trends in this disease are:
- People have now developed multiple food allergies, instead of just one.
- Adults diagnosed with late onset food allergies. (i.e. One day he ate corn and was fine and the next week he had it again and went into anaphylaxis shock (a severe whole body immune system response that could lead and has led to death.)
Because of donations and support to the organization, FARE is closer today than 5 years ago to finding a cure and cause of food allergies.
New things available today:
Oral immunotherapy, more trials, better support for patients after diagnosis, more support from the government, food, bio tech and pharmacology industries.
Every dollar counts in donations, within this organization that only has one grant. Most donors give $25 to $250, and those dollars add up just as much as the volunteers who give their time. "We do also have corporate sponsors, who we are equally as thankful for," says Lehr.
How to volunteer:
In the advocacy part of FARE’s organization, people can volunteer through the 65 walks they do per year across the nation, through leading support groups in different communities, through helping with petitions and in local government and even just by volunteering to be a part of a clinical trial. Every individual’s contribution makes an impact to the cause and within FARE
Because of donations in 2012-2013:
- Today the food allergy researchers are experimenting and testing accuracy/results on how Chinese herbs and medicines impact food allergic mice.
- Emergency Epinephrine Act (a.k.a) The Epi Pen Bill signed into Federal Legislation and Obama’s support as well as his own personal story of how food allergies have impacted his own family. The Epinephrine Act will not only help save the lives of those diagnosed with food allergies but could save the lives of children who have not yet been diagnosed and are have an allergic reaction to food during school.
Where donations to FARE are going:
- FARE needs to have the infrastructure to support and accommodate more clinical trials, ability to recruit the best scientist, offer scholarships to attract people to come into the field, research and test innovative therapies.
- “We need better outreach to connect doctors to FARE and continue to help newly diagnosed patients to give them the support and life management skills to cope with their illness,” says LeFemina, “We just printed out 50,000 new patient packets for newcomers to the disease so that people don’t leave their doctors’ offices wondering what they should do next.”
The average life of a person with the disease:
When food is one of the very staples of our existence and we find ourselves surrounded by it in every aspect of our lives and then are suddenly diagnosed with life threatening food allergies or even just that certain foods make us very, very sick, our lives can be quickly turned upside down from reading every label on every package, even things you may normally think are simple ingredients including maple syrup or oatmeal to having to say at every meal out “I have food allergies to…..” to screening what your partner has eaten that day before you can kiss and sometimes even hug him/her, if you even accidentally consume that food you may miss days or weeks of school or work. Having an allergic reaction is like having the flu for many weeks in some cases in worse cases we are haunted with stories like these.
"In February 2012, my 8 year old niece died of anaphylaxis after drinking soy milk (she had a peanut allergy and very bad asthma). I was diagnosed with a peanut allergy when I was 2 years old. I am now 38. I stayed away from all nuts growing up but never knew if I was really allergic to all nuts until last year. After losing her, I decided to get tested again, after struggling with more allergic reactions to other foods. In March 2012, I was told by my doctor that another peanut reaction may end my life and it was confirmed I was allergic to tree nuts, soy, and green beans. During another visit, I also found out I have a food allergy to carrots. My food allergies have becoming an ever increasing challenge for me as I have gotten older," says Alexa Kauffman.
Different food allergies affect people in different ways, none of which are mild. A true food allergy is much different than food intolerance. While not every person goes into anaphylaxis shock immediately, it is impacting their immune system and can cause them to have flu like symptoms for weeks.
We can hardly go anywhere without running into food (ballparks, soccer games, work, school, social gatherings of any kind). In no way do we want to take it away from the rest of the world, but it is something a food allergic must consider before they step into those situations. Many people with the disease often feel misunderstood and isolated as many don't understand the severity of it nor all the ins and outs and for that matter, often those with the illness have not been well informed about how to take care of themselves.
The hope is that organizations like FARE can not only pinpoint the cause in the rise of food allergies in both children and adults, but find a cure or treatment as well and in the meantime really help people help people with the management of the disease.
People with food allergies don’t really look different than the average person- (See the slideshow). They are able to live normal healthy lives as most are under 1 condition, they don’t even have a TRACE amount of food(s) they are allergic too. Even “a little bit” can invoke a reaction.
One food allergic, foodie recalls the days of going to a restaurant and being able to order without asking questions, ripping open a package of food and just eating it without reading the labels, today her entire world has changed and feels consumed with reading labels and spending life in the kitchen preparing every snack, meal, and tasty treat after her body had suffered from severe food allergy symptoms and a doctor confirmed her diagnosis. You can read more of her story at adventuresofanallergicfoodie.com. She is one of many.
John and Veronica of FARE make a great point, the hardest thing for people to understand is that these people who are diagnosed with a life threatening, autoimmune disorder appear “normal” they don’t look like sick kids, they are not in the hospital, losing their hair, instead they play soccer, are bookworms, do average normal kid things, but one little thing could go very wrong and suddenly their lives are in jeopardy (if they consume something they are allergic to).
Food allergies are a global issue and Lehr knows this better than anyone else in the United States as he sits on the International Food Allergy and Anaphylaxis Alliance board, which has 20+ nations involved including Europe, Asia and South America. According to the World Allergy Organization, 220-250 million people have food allergies.
Lehr says, “Food allergies are on the rise and are a serious and potentially life threatening disease. We (FARE) are working on behalf of all those with food allergies, to keep them safe and included while finding better treatments to improve their quality of life.”
Interestingly enough while Lehr feels the food industry is adequately involved in taking a proactive steps to understanding food allergies and keeping the industry informed, many others suffering with the illness daily feel differently and those who work in kitchens across America also feel they are not well educated on the subject.
Watch for future articles where we will feature chefs' views on food allergies and food intolerance as well as those suffering with the disease and how their experiences are when it comes to handling food in their daily lives- from how the product manufacturers handle this, inadequate labeling to how chefs view and handle this issue.