Join us for an exclusive screening! Spokin, AUVI-Q (epinephrine injection, USP), Enjoy Life Foods, and Safe + Fair are thrilled to invite you to a private screening of Rotten: “The Peanut Problem.”
Watch a sneak peek of the trailer for Rotten:
We could all learn a thing or two from the incredible women being featured in this unprecedented documentary. Between Ruchi’s work as the director of the Science and Outcomes of Allergy and Asthma Research (SOARR) and Susie’s dedication to building an empowerment tool, the Spokin app — the future of food allergies is far from rotten. Ruchi and Susie sat down with us to share some of their best advice as food allergy parents and professionals.
1. What came first, the allergies or the career?
Ruchi: The career came first for me. It all started in 2004 when a Chicago family came to our hospital wanting more food allergy research. I was focusing on asthma at the time, but when I met the family, their passion and commitment were so strong that I felt I had to move into food allergies. As I looked at the whole field, it was really shocking to me how little had been done. It made me think that I had an opportunity to really contribute. Then about three years after I began my research, I had my son and daughter. One day, they were playing together after my son ate a PB&J, and my daughter broke out in hives. That was when I became a mom with a child with food allergies. After having done all this research, I began living it.
Susie: In my case, it was the allergies that inspired the career. When my daughter was diagnosed at age 3 with severe peanut and tree nut allergies, I took one night to cry, one day to be mad, and then I got to work. I set out to co-found what is now known as FARE Chicago to help raise money and awareness. Our learning curve was steep but we learned to manage. However, each age and stage brought new challenges to conquer and as my daughter entered her teen years, it started to sink in how much work this would be for her, everyday for the rest of her life. We all reinvent the wheel day in and day out searching and evaluating resources. I envisioned an easier way and left a multi-decade career on “Wall Street” to build what I wished existed – a magic moment of “yes” for people who have heard so many “no’s.”
2. You’ve both dedicated your careers to food allergies. How do you see your work making an impact?
Ruchi: My ultimate goal is to improve the lives of families living with food allergies through my research. The three areas I focus on are epidemiology, how that plays out in the clinic, and how we can make a difference in the community. We want to understand every aspect of the public health impact — reactions children have to certain foods, how they develop tolerance, how you can predict severity, etc. Then we want to make a clinical impact by improving the care that families receive from their pediatrician. We take all of that and bring it to the community, working in schools to improve the day-to-day quality of life for food allergy families. My hope is to ultimately see that we achieve these goals. We’re doing everything we can through our research to make sure families live the best lives possible.
Susie: People with food allergies are making 5-10 life-threatening decisions a day. If we spend an average of 15 minutes a day researching these decisions (about the time it takes to figure out if Girl Scout cookies or Halloween candy are safe!) that adds up to an entire year over a lifetime. Spokin created a platform to discover, search and share food allergy resources and to have everything in one place. We’re already seeing it change lives. A mom was able to give her child ice cream for the first time because of Spokin, a young man used the Spokin app to find a safe restaurant while traveling in New York City, restaurants his non-allergic friends were excited about – these moments are so meaningful and they are why we go to work everyday. We want people to open up the Spokin app and have that magic moment of “YES!”
3. Why is this documentary so exciting for the food allergy community?
Ruchi: The documentary is so exciting because it is an opportunity to improve awareness on a large scale. It’s wonderful that Netflix was interested in looking at food allergies so closely — understanding the public health impact on my side, but then also talking to other scientists about potential treatments and cures. They also captured the personal side of food allergies by talking to families about how they manage and live with it every day. My hope is that the series will reach a wide audience and increase awareness and understanding of the condition.
Susie: Netflix reaches over 100 million people. Bringing the topic of food allergies to an audience this size is huge because education is the lifeline. Having friends and family that are educated on food allergies and willing to care for our daughter has allowed her to live the fullest life possible including experiences many people take for granted like sleepovers, going out for ice cream and overnight camp.
4. What is your best advice for food allergy parents?
Ruchi: Know you’re not alone. There are so many other families you can connect with who have lived through your food allergy experience. Use their knowledge and resources to improve your life. There is so much great and practical information out there that we can learn from each other. I think that’s what’s so great about Spokin. As a community, we need to help each other decrease the anxiety and fear to be able live wonderful lives. Also, just know that research is really moving fast. In terms of hope, I really feel there are going to be multiple treatments available very soon. We’re going to better understand the disease and hopefully be able to better predict who is a better candidate for treatment, who can develop tolerance, and just have more to give patients in the coming years. So hold on to that hope and know that food allergy research is moving at lightening speed.
Susie: Find a balance between keeping your child physically safe and emotionally safe. It’s so easy to focus on protecting your child by avoiding allergic reactions that it can come at the expense of their emotional health. With my daughter, we try to say yes to as much as we can but that means a lot of work on our end. We’ve spent hours baking safe cookies, researching safe restaurants, bakeries, food, hotels – it’s an endless list. It’s a core reason Spokin exists — help people find resources faster so we spend more time enjoying our kids instead of worrying about them.
5. What are you most looking forward to in 2018?
Ruchi: I’m so excited about so many things. I’m really looking forward to publishing all our new public health data involving epidemiology on kids with food allergies. For the first time, we’re also going to be able to characterize food allergies in adults and adult onset food allergies. Another exciting research project in the works is an RO1 grant from the NIH that is looking at disparities in food allergies on a large scale through four food allergy centers. We’re going to finally be able to characterize phenotypes of food allergy the way we have in other conditions.
One big upcoming event that food allergy families should know about is the Midwest Food Allergy Conference for Education and Science (FACES). It is going to be an incredible opportunity to bring families together and give them all the information and latest research. FACES will also be a great resource for clinicians to come together and get updates on the latest and greatest in food allergy research. But it’s not just for adults. For the first time, we’re going to have a kids meeting where we can empower them by letting the kids have their own chat with researchers and ask their own questions.
Susie: We are so excited to bring new features to the Spokin app! We’ve gotten great feedback on our recent iOS app launch and are excited for where the app is going. One of my favorites is the new ability to sort reviews by the allergies of the reviewer – now that we have almost 6,000 recommendations, creating that short cut is vital!
6. Any advice for women and girls who want to be leaders in science/business?
Ruchi: They will be! There are no ceilings for them anymore. I have a daughter and get to coach her basketball team, and it’s so inspiring — these girls today are just incredible. My advice would be to stay curious, ask your questions and get involved early. If you’re interested in science, find every opportunity you can — science museums, research institutions, hospitals. Start seeking out opportunities for yourself and learn as much and as early as you can.
Susie: I’m the mother of 3 girls, so this topic is very close to my heart. I want them to know that they can do anything but more than that, I want them to embrace “failure” and see it as learning. I want them to always try. I love the TED Talk “Teach girls bravery, not perfection” from the founder of Girls Who Code, Reshma Saujani. Her advice is enlightening for anyone.
7. Favorite Spokin find?
Ruchi: There are so many things I’ve found through Spokin. What’s great for me is getting that Spokin email that takes you to the app. It’s so nice to get these quick tidbits about restaurants, travel, safe foods, cool researchers doing amazing things, new companies that are trying to improve our lives — there is so much valuable information that impacts your daily life and adds to your knowledge about new things on the horizon. To have a group that’s really looking out there for you means so much. I can’t spend 24/7 trying to figure out what is the latest good food that’s safe for my kids or the latest what’s going on. Spokin is a whole community keeping you updated on a regular basis, and that’s what’s so amazing.
Susie: I LOVE all the travel recommendations like hotels and restaurants, especially international ones. I save them in my Spokin profile and am building a bucket list for my family. It’s so valuable to know others with your same food allergies had good experiences – what could have taken us hours, I can find in seconds. Big food allergy win!
