My Month of Awareness & Why It Matters
Transcript Disclaimer:
This transcript was generated using AI software from the original podcast audio and may contain errors, omissions, or minor inaccuracies. It has been lightly edited for readability. Please refer to the full podcast episode for the most accurate representation of the conversation.
Welcome to the Don't Feed the Fear podcast, where we dive into the complex world of food allergy anxiety. I'm your host, Dr. Amanda Whitehouse, food allergy anxiety psychologist and food allergy mom. Whether you're dealing with allergies yourself or supporting someone who is, join us for an empathetic and informative journey toward food allergy calm and confidence.
Amanda Whitehouse, PhD 0:21
Welcome back to the Don't Feed the Fear podcast. I am going to do a solo episode to celebrate the end of May, which is packed with awareness campaigns and celebrations. It was Food Allergy Awareness Month, allergy and asthma awareness, mental health awareness, celiac, eosinophilic diseases, Alpha-Gal awareness.
So many things to talk and think about, and I am ending this month feeling incredibly emotional, deeply hopeful, and really proud of this community. I'm also a little bit exhausted, and you can probably hear it in my voice, but I have been traveling so much, making the most of all of the events that have been going on, and trying to get more and more involved to learn and grow myself and to bring more to you here on the show.
As I'm ending the month, I've been thinking a lot about how awareness months can sometimes start to feel repetitive or performative, but this month reminded me that awareness is not the endpoint. It is what opens the door to action. It's how we pull people in to take steps with us into research, into changing legislation, into storytelling and connecting and building our community, better systems, creating safer futures. Because ultimately to me, that's what food allergy awareness is about So over the last few weeks, I had the opportunity to attend several events. I was in New York City, Washington, DC, and I was in the capital of New York here, Albany, with advocates, researchers, physicians, nonprofits, parents, teens, families who are all working incredibly hard to improve life for people living with allergies and all of the related chronic illnesses that we are talking about this month, and hopefully all year long.
So I thought today I would do something different and take you behind the scenes a little bit. I want to share what I saw, what I've been learning since I started trying to get involved in this new way over the last couple of years, what impacted me emotionally, what gave me hope, and a few ways that you can get involved. Sometimes people think that advocacy means standing at a podium, becoming a policy expert, but honestly, a lot of advocacy is just refusing to become numb. It's continuing to care about something that you're accustomed to that may not be normal, but that has become your new normal, and learning to balance the acceptance that you have reached with that, along with staying motivated to create change, to make things better, not just for yourself, but for others.
Throughout this episode, I will be mentioning families who have turned their unimaginable loss into advocacy and systemic change, and I have always felt that one of the most meaningful ways that we can honor people who are lost to food allergies and asthma is by continuing to speak their names, lift up their stories, and create safer futures for others because of them. That's what their families are doing, and that's the very least that I can do along with them To me, that's what this month is truly about. But I also wanna take a moment to honor the many families carrying the same grief quietly. Not every parent who loses a child becomes a public advocate. Not every family shares their story publicly. That's okay. They should never have to in order for their loss to matter. But I want to say to them that you still have all of our support and empathy and compassion.
Sometimes when I would think about those really hard things, it would feel overwhelming and I wouldn't know what to do. I would want to help and contribute and have just no clue what I could do. Everything felt like it just couldn't even be a drop in the bucket of these huge and important issues. So I never really got involved in legislative advocacy until last year.
I have a lot to learn from the people who have been doing this for years, and the most important thing that I have picked up from observing them is that advocacy is much more human and accessible than we imagine. It's parents and kids in rooms together sharing stories. It's physicians explaining why a policy matters clinically and how it affects their patients. It's kids very powerfully sharing their own experiences. Organizations teaching regular people like me how the process works and how to get involved. And honestly, becoming involved has had a really positive impact on me psychologically, not because it removes the fear or the realities of living with these conditions, but because it transforms helplessness into connection and action. It's a meaning-making process that we often talk about in psychology that helps us to move through grief. You realize you're not alone. You meet people who understand your life instantly, and you become so connected because of that, and you start seeing how many people are quietly working behind the scenes to make things safer and better for this community. That's been incredibly healing for me.
I think often about that Mr. Rogers quote that people share in times of stress or trauma. He said, "When I was a boy and I would see scary things in the news, my mother would say to me, 'Look for the helpers. You will always find people who are helping.'" And the best way to find the helpers is to join them and become one of them."
Food Allergy Fund Summit, NYC
So the first event that I was excited to go to for the first time this year was the Food Allergy Fund Summit in New York City. I got to turn this into a girls trip with one of my best friends, which made it extremely special and reminded me of the importance of what I tell everybody else all the time, which is we have to take time for ourselves and connect and do the things that we love and that we're passionate about So my time with her was a great reminder of that. We got to go to an amazing dance class at a studio called Forward Space in the city, which I've been waiting years to go to. Thank you so much to them for that amazing class and that reconnection to music and dance that really helped me to reconnect with myself and remind me of this importance of self-care.
The summit itself was incredible because it really highlighted how much innovation is happening right now in food allergy research and treatment. There were discussions about a lot of the projects that the Food Allergy Fund, or FAF, has been working on and investing in, including microbiome research, medication repurposing, venture philanthropy models, biotech startups, AI. One of the most fascinating presentations was from Tal Galon, the CEO of Anjo, which is developing wearable technology using AI to help detect early signs of anaphylaxis.
As a parent, hearing about this felt really emotional, mostly because this technology could genuinely save lives, and also because my teenager developed this idea at a science fair invention project a few years ago based on a very similar idea. He was simultaneously devastated that he's not gonna be a millionaire because someone beat him to it, but also, of course, really thrilled that someone had created it and that it's a real thing that we might be able to have someday. Very relatable teenager contrasting conflicting emotions energy. But it also reminded me how many kids growing up in this community are already becoming innovators, scientists, advocates, and problem-solvers because of what they have lived through.
I look forward to the ideas that he and all the kids his age and the young people coming up will be bringing to this space. And I'm already in touch with the CEO of this company so that in the future we can talk more about the technology, the timelines and the availability, and what this might mean for families, and how you might in the future be able to wear a smartwatch that can monitor physiological symptoms and indicate when you might be at risk of anaphylaxis.
Another major highlight of the FAF Summit was hearing Dr. Becky Kennedy speak. I've been following her for years, like many of you. She has such a great voice in the mental health space. And what struck me wasn't just what she said, which is always great and so helpful, but it was the significance of who was saying it. Those of us inside the allergy world understand the emotional toll this life carries, and there are many of us in the mental health field trying to make that translation for all of you and give you tools for working with it. But hearing someone with such a broad parenting audience speak about food allergies with compassion and emotional intelligence felt incredibly validating and exciting about getting this message outside of our community to the bigger society who needs to understand it, who we want to understand it, too.
The full summit videos are all available online. I'll make the links available in the show notes. And Dr. Becky worked with FAF to create a guide on talking to your children about allergies. So that's all available on the Food Allergy Fund website. But I wanted to share my favorite line from her talk. If you ever attend any of these events, you will see me right in the front like such a nerd with my notebook out, writing frantically and trying to capture everything. But it really helps me process and retain what I learned, and I'm so glad I didn't miss this one. "Eye rolls are a teenager's compromise." That one is staying with me forever because so many of us are parenting teens who are trying to go through that developmental process of individuation, which is where they separate from us. They're still managing very real medical risks, but they need to have their own identity, gradually start taking on their own responsibilities, and have some distance from us. So sometimes when we're having conversations about really important things like, "Did you remember to take your epinephrine? Did you read the label?" If they're doing all of those things that we need them to follow through on consistently to be safe, and we get eye rolls, frustration, dismissiveness, irritation when we ask those safety questions. What Dr. Becky reminded us is that sometimes the eye roll is the compromise. They're annoyed, but they're still listening. It's like a shrug that says, "I'm still engaging. Okay, you're right. I know." They're still participating. And that reframes it in a way that can completely change the emotional tone of those interactions for both them and for us. And yes, we don't think eye rolls are respectful, but what we want is to be heard and for them to follow through so that they can stay safe.
Allergy and Asthma Network’s Day on Capitol Hill, Washington, DC
Not long after getting back from that trip, I was so fortunate to get to attend an advocacy event in Washington, DC, hosted by the Allergy Asthma Network. And this was one of those experiences that reminds you how deeply personal advocacy is. I got together with some people that I knew, but mostly folks that I hadn't met before. We were discussing legislation, but behind every bill is a family, a story, often a trauma or a tragedy or a loss, and people in rooms sharing those moments that something could have gone differently gives so much clarity on what direction we need to take things sometimes.
On Capitol Hill, we advocated for several bills, including the Safe Step Act, the Help Co-Pays Act, the One School One Nurse Act, and Gio's Law. And I'll be posting a little bit about all of these, but I really want to emphasize something that I haven't talked about yet on the show, which is Gio's Law. That is one that has been emotionally with me and many of you for years now. Gio's Law is named after Gio or Giovanni Cipriano, who was a fourteen-year-old from Lynbrook, New York, who tragically passed away from anaphylactic shock after accidentally ingesting his allergen.
Many of us in this space know his mother, Georgina Cornago, who has championed legislation to ensure that epinephrine is available when we need it. That police officers and firefighters and first responders are trained and equipped to treat the reactions when they are the first to arrive to the scene. So the original legislation was signed into law in New York, and now there is a bipartisan push to get a federal version of Gio's Law passed to expand those lifesaving measures and training across the United States. Because we are both New York residents, I had the honor of sharing the day and being on a team with Georgina advocating on behalf of the bill.
I have heard this story many times. It gets me every time, but I was a mom in that room with one of my children listening to another mom share that story of the most horrific loss that you can imagine in order to protect my son who was sitting there with me and the other teenager who was in the room with us and all of our kids Hearing her tell that story in that context really hit differently. I'm at a lack of words to try to describe it to you, but it was incredibly heartbreaking and inspiring and humbling. So thank you, Georgina, for all of your work.
I also got to learn more from her about the teen advocacy panel that she is building through her foundation, Love for Giovanni. And honestly, seeing the teens stepping into the advocacy work right now is giving me so much hope for the future of this community. So I love that she is pulling in that energy and the many ways that we can harness that for good.
In New York City and again in DC, I also got to spend time with the Togal family, Seth, Jennifer, and their daughter, Adina, who have been working tirelessly for years on the Adina Act. The Adina Act is a federal bill that would require plain language allergen labeling for medications, including the top allergens and gluten in prescription and over-the-counter medications. Every time I have a conversation with someone about this bill, they say what you're probably thinking if you haven't already heard about the Adina Act. Don't medications already have to clearly disclose their ingredients and their allergens? No, they do not, which means that families and patients are left trying to decode ingredient lists in times of emergencies, and instead of focusing on what is happening, the illness or the situation at hand, they are contacting manufacturers or avoiding medications that could help them because they can't safely verify the ingredients.
The bill was inspired by Adina's horrible reaction to a medication that she was given while she was away from home at a camp after getting sick, and she had to be rushed to the hospital and treated because her allergens were contained in the medication. Our food labeling laws still have a long way to go, but the fact that they are still stronger than labeling for medication is absurd. And this bill matters not just for food allergy patients, but also for people with celiac, eosinophilic disorders, alpha-gal syndrome, and other medically necessary dietary restrictions.
You can follow those two causes on social media or by finding their websites. LoveforGiovanni.org is the Love for Giovanni Foundation, and their Instagram is also Love for Giovanni Foundation. You can learn about the ADINA Act at adinaact.com. It's spelled A-D-I-N-A, and their Instagram account is the_adina_act_effort.
Allergy Advocates NY’s Advocacy Day in Albany
I wasn't home for long before I had another trip, which was a fun one with my son to a concert, back for a couple of days and then off again to Albany, New York at an event that was held by Allergy Advocates New York for advocacy at the state level. Their event last year was my first try at jumping into some of this work, and I am learning so much from all of the people who are involved there.
This organization was founded by Jon Terry, who is the president, and is also run by the executive director, Toni Taylor. Jon founded the organization in memory of his sister, Ruth Cornell, or Ruthie, who didn't even know that she was allergic to honeybees and had even been a beekeeper with hives in her yard for years without any incidents when she was stung while working in her garden and passed away. Ruthie's story highlights the importance of epinephrine available quickly and widely, and Jon work in her honor has been such a privilege to be a part of.
At this event, we focused on insurance coverage for early allergen introduction to reduce the number of food allergy cases in young children, menu labeling legislation modeled after California's ADDE Act, which was passed last year and takes effect in California in July of this year, that has also been introduced in many other states, thanks to the Asthma and Allergy Foundation of America, who's been really working hard to get that bill moving after it was started by Robyn and Addy Lao in California.
The other law that we were working on is strengthening and amending Elijah's Law. Elijah's Law was created in honor and in memory of three-year-old Elijah-Alavi Silvera, who died after having a severe allergic reaction at his childcare facility. Despite having documentation of his life-threatening dairy allergy, asthma, and other allergies, the facility fed him a grilled cheese sandwich and then failed to follow the emergency anaphylaxis protocol.
When I was in New York, I got to spend time with Thomas Silvera, Elijah's dad, who has worked tirelessly on this law along with Elijah's mother. I was so lucky to have him on the podcast, and have heard this story many times. He told it on the stage in New York at the Food Allergy Fund Summit, and like I always do when I hear it, I sat in the audience and I cried, and I cried. The story was also shared by Elijah's mom, Dina, in the film that we discussed last week on the show, May Contain My Life, created by Just Like You Films. Every time I hear them tell Elijah's story, I cry. And honestly, I hope that I always do. I hope I never can hear that story and not be touched and moved and heartbroken about something so preventable happening. When we stop feeling the emotional weight of these tragedies that are preventable, we risk losing the humanity underneath the advocacy. And that is why the work that people like Thomas and Dina are doing, sharing their story, continuing to share their heartbreak with us, is so valuable to our community. It reminds us how high the stakes really are.
The film is currently screening in AMC Theatres, so you can have the chance to watch that, and if you missed last week's episode with Mandi Kearns, one of the filmmakers, definitely go back and listen to that because we talked a lot about the importance of storytelling in the resilience of this community, and why representation matters so deeply.
So more organizations for you to follow and learn about these initiatives:
- AAFA is aafa.org, And their Instagram is @FAANational. They're working really hard to spread the menu labeling throughout the country that was started by Robyn and Addie in California. You can find them at addietellsall.com And on Instagram @addie.tells.all.
-Elijahalavifoundation.org is where you can find out more about that story and on Instagram @elijasecho. And you don't have to be in New York to get involved with their cause. Elijah's Law has been passed in New York, Illinois, Virginia, Maryland, California, and Arkansas, and in major cities, and they are working to do that across the country so that our most vulnerable children can have those protections everywhere. And finally, here in New York State, allergyadvocatesny.org is the group working on a lot of the local change here. They are not on Instagram, but they are easy to find on Facebook at Allergy Advocates NY Amidst all of the legislative and emotional conversations that we were having, there are so many moments of joy this month.
Summary
My favorite moments are hearing children and teens speak publicly about their own experiences to remind us that this work is ultimately for them, for the future teenager who feels safer eating out with friends or going on a date, for the child whose school has trained staff and epinephrine access, for the college student navigating food allergies independently for the first time, and for all of the parents out there who can experience less fear because our systems are finally improving. That's the point of this work. Thank you to all of the amazing people who are teaching me how to do that, who have already been doing that work for many, many years, and who have created so much meaningful change already.
One of the biggest things I'm taking away from this month and all of my experiences is that progress in this community is happening. It's not fast enough sometimes, and it isn't perfect, but it really is happening. There are researchers working on treatments, advocates changing laws, parents creating nonprofits and awareness, teens becoming leaders, filmmakers telling our stories, psychologists addressing the mental health impact that has been neglected for so long, and all of us refusing to stay silent.
Before we end today, I will recap with three simple action steps.
1. First, you can watch the summit videos from the Food Allergy Fund and follow their work.
2. Second, get on your social media and start hitting follow or go to these websites of the organizations that I have mentioned and sign up for their newsletters so that you can stay informed about advocacy efforts and ways to contact your representatives. You don't have to travel all over all month like I did. Sometimes it's just as simple as making a phone call or an email.
3. And third, if you're not already following me on social media, you can find me on Instagram and Facebook at thefoodallergypsychologist. There were a lot of laws in there that I didn't have time to touch on today. It's just too many details to squeeze in. So I will be doing my best to share some posts to teach you more about those too, and how you can get involved.
Thank you for listening. Thank you all for all that you do quietly and loudly. Thank you for spending this awareness month with me and with each other. I'll talk to you again next week.
The content of this podcast is for informational and educational purposes only, and is not a substitute for professional medical or mental health advice, diagnosis, or treatment. If you have any questions about your own medical experience or mental health needs, please consult a professional. I'm Dr. Amanda Whitehouse. Thanks for joining me. And until we chat again, remember don't feed the fear.