author of Feeding Eden

Kids With Food Allergies and the Allergy and Asthma Foundation of America are Merging

This will be a good thing for our allergic population. The Press Release (since I can't write it better):

ASTHMA, ALLERGY NONPROFITS TO MERGE AND FIGHT COMMON DISEASES TOGETHER

Group Will Expand Traditional Outreach and Online Communities, the Combination Patients Want

(Washington, DC, February 15, 2013) The patient organization with the largest online community for families raising children with food allergies, and the largest organization for asthma & allergy patients intend to merge. The Kids With Food Allergies Foundation (KFA) will become a division of the Asthma and Allergy Foundation of America (AAFA), and together they will be the most comprehensive nonprofit source of education, advocacy, research, social networking and support for millions of families living with these diseases.

In 2012 the Board of Directors for each organization voted to approve the merger. The required regulatory documents have been filed and partially approved, with completion expected soon.

60 Years, 60 Million People

More than 60 million Americans are living with asthma and allergic diseases – including over 13 million children and adults with food allergies. The prevalence of these chronic diseases has grown dramatically over the past few decades making asthma and allergies some of the most common chronic diseases among all ages. Unfortunately, deaths related to asthma and severe life-threatening allergic reactions (anaphylaxis) continue to occur.

It is well understood that people with asthma have an increased chance of having food allergies, and people with food allergies have an increased chance of having asthma. In addition, children and adults with food allergies are more likely to have an anaphylactic reaction if they also have asthma.

The guidelines for diagnosis, prevention and management of asthma and food allergies put patient awareness and education at the center of quality care and positive outcomes. Teaching families how to prevent symptoms or attacks, handle emergencies, properly use treatments and care for children with these diseases is critical. “Patient education is key,” says Tom Flanagan, Immediate Past Chair of AAFA’s National Board of Directors and a parent of children with severe asthma and food allergies. “AAFA and KFA are two of the most respected sources of this type of information and education,” says Flanagan, “so this merger will be a great fit for both groups, and great news for the patient community.”

A Modern Approach to a Growing Problem

AAFA is celebrating its 60th Anniversary this year and remains committed to its original mission of education, advocacy and research. AAFA was founded in 1953 at a time when asthma and allergies were first recognized as a national health crisis in the U.S. “We have not wavered in our fight against asthma and allergies,” says Bill McLin, AAFA’s President & CEO. “Over the past six decades, knowledge about these diseases, methods of patient support and educational tools have evolved,” says McLin, “so bringing KFA into the AAFA family will help both organizations meet the growing needs of the people we serve.”

Founded in 2005, KFA has become an essential part of the food allergy and anaphylaxis community offering patient education programs, webinars, an allergy buyers’ guide, an electronic database of allergen-free recipes and more to help keep children safe and healthy. Most notably, KFA hosts the largest and most active online food allergy and anaphylaxis community at www.kidswithfoodallergies.org, a critical platform for parents and caregivers who want to network with others about raising kids with food allergies and related diseases.

Lynda Mitchell, KFA’s President and founder, is the parent of a son with severe asthma and food allergies. She will join AAFA’s leadership team as Senior Director of KFA. She will oversee KFA programs within AAFA to ensure their continuation. Mitchell will also help expand AAFA’s online programs and services in related disease areas such as asthma. “As part of AAFA, KFA will continue all of our current work, and with our combined mission of education, advocacy, and research we will be able to do even more to help families,” says Mitchell. “Families raising children with food allergies are often also dealing with anaphylaxis, asthma, latex allergies, skin allergies, nasal allergies and many related conditions. Together we will be the most comprehensive and reliable source for people seeking information and support for all of these issues.”

About AAFA

The Asthma and Allergy Foundation of America (AAFA) is the oldest and largest nonprofit patient organization dedicated to improving the quality of life for people with asthma, allergies and related conditions through education, advocacy and research. For more information about AAFA, KFA and to see our merger FAQs visit www.aafa.org/kfa, or call 1-800-7-ASTHMA.

and On and On

I've used this site as a wide wide playing field to write about food allergies, parenting and food allergy related food. Today is different. Three things happened today:

One - Lately my posts have been increasingly sparse. Not because I feel "been there done that" and so over food allergies. Rather, after nine years of living with food allergies that haven't really gotten any better (although the living part has) I decided today that I need to stray away in order to fight off my Food Allergy Fatigue.

Two - This morning in the shower, I had some thoughts some unfinished thoughts on a writing project so I talked in my head to a particular friend about it. His name was Gary. He is dead and I talk to him fairly often. He was killed from gun shots thirteen years ago. He wasn't my only truly Great Friend and he wasn't my only "almost the one" boyfriend, but at different times, he was one of those. I loved him. Because he is dead he is a really good listener. He can't look me in the eye and say, "So why, exactly, are you telling me this?"  I never talk about Gary aloud with my family because my daughter just one year old when he died and now that my children are old enough to ask questions and understand answers I don't want them to understand the details of his death, which are extremely complicated and awful. (At some point they may read this but since it's not directly about them, probably not for awhile if ever.)

Three - Shortly after that shower, as I sat down to procrastinate about writing a post about one of several allergy-ish topics, I opened an email that my husband sent. It had a link to a column that our Great Friend Rob had written about Death of loved ones, and a Great Friend of theirs who also died too young. Rob didn't have to write it. But he did and I understand why. And after reading his piece once but not twice because if I read it twice I would decompose all over again, I decided that I needed to share it and not do much more than that:

Except to add this: In John Green's crushingly good Y/A novel The Fault In Our Stars, he reminds us, "That's the thing about pain...it demands to be felt." I'm putting this here - not in demand - but to thank Rob and other the writers who give their words up to us so we don't have to find them for ourselves:

http://www.sfreporter.com/santafe/blog-4216-over-and-over.html

 

 

Food Allergies: Bullying…Teasing…Let’s Call The Whole Thing Off

I've spent the winter holidays enjoying my family and, in effect, muted by the recent surge of media surrounding the topic of "bullying" in regards, to food allergies. In case you missed this information stream (and if you are reading this post than it's very unlikely) here is one of so many - a Time article on CNN.com discussing recent research conducted by Mount Sinai Medical Center:

Bullying over Food Allergies

It's not easy to read about bullying. Not because my food allergic son Eden has been subject to the kind of overt aggression described in the study. But because he has experienced more subtle yet increasingly disarming behaviors that amount to nothing more or less than hurtful teasing. What's the difference? I looked at Merriam Webster...

Bully verb (transitive) 1 : to treat abusively 2: to affect by means of force or coercion / verb (intransitive verb) 1:  to use browbeating language or behavior

Tease verb (transitive) a : to disturb or annoy by persistent irritating or provoking especially in a petty or mischievous way b : to annoy with petty persistent requests : to obtain by repeated coaxing c : to persuade to acquiesce especially by persistent small efforts d : to manipulate or influence as if by teasing e : to make fun of

What does food allergy teasing sound like? It sounds like one boy shouting above all the rest at a crowded lunch table Hey guys, Eden has never tried ice-cream. Ever! It sounds like a child waving a doughnut around and whispering across his desk at my son I'm practically torturing you with this aren't I? This as he licks his lips and Eden looks down at his his "safe treat." It sounds like some other remarks Eden and I have heard that aren't worthy of repeating in this post.

Bullying is awful. It's dangerous and insufferable. Teasing is ... something else. Teasing undermines. It embarrasses. Teasing is a baby step towards discrimination; a claw sharpening of sorts. It's my guess as a parent that more food allergic children are teased than bullied. Either way, as the lead researcher, Dr. Eyal Shemesh, of the seminal bullying study points out:  "... these kids have a vulnerability that can be exploited. If someone wants to threaten them, they know how." Either way, it's now clear that those who love and protect children with food allergies have a duty to help them understand how to manage these discriminatory acts just as they teach them to manage their medical condition.

Asthma: Wonky Weather & Wise Words

Wonky weather here in NYC recently. Last week, the temperature rose by nearly 20 degrees, dropped, then the skies "precipitated," and finally cleared. As my husband predicted, "We are all about to get very very sick." And "we" did. So for my son that meant an asthmatic flair.

Wherever you live, the winter brings its own health challenges. This is especially the case for allergic and asthmatic people whose bodies can react allergically viral exposure. So please note that my friend (and extraordinary editor ) Henry Ehrlich correctly timed the publication of a fantastic article, written by  Dr. Larry Chiaramonte, about asthma medication: Don't Take That Asthma Medication - It's Bad for Your Asthma. As usual, their site, Asthma Allergies Children has taken the complex topic of Asthma, thoroughly discussed the contradictions and nuances  and then concluded with practical measures where other media leaves readers in confusion, or worse, undue concern.

 

The Asthma and Allergy Foundation of America Supports Feeding Eden

I'm so looking forward speaking  and reading from my memoir at a support group event sponsored by the Asthma and Allergy Foundation of America—New England Chapter, this Thursday November 15th, at the Newton Wellesley Hospital. If you live in the greater Boston area I'd love to see you there. For more information on the event you can check out information on the AAFANE website or call:

781-444-7778 or toll free: 1-877-2ASTHMA E:mail: [email protected] www.asthmaandallergies.org

FAAN and FAI Merge as FARE!

Readers might be interested in the latest progress report from the Food Allergy and Anaphylaxis Network and the Food Allergy Initiative:

"We are pleased to announce that the merger between the Food Allergy & Anaphylaxis Network (FAAN) and the Food Allergy Initiative (FAI) has been completed. Our new organization, dedicated to food allergy research and education, will be known as FARE. 

Building on the significant accomplishments of FAAN and FAI over the past two decades, FARE’s mission is to ensure the safety and inclusion of all individuals with food allergies while relentlessly seeking a cure.  We will accomplish this by:

·         Funding world-class research that advances treatment and understanding,

·         Providing evidence-based education and resources,

·         Undertaking advocacy at all levels of government, and

·         Increasing awareness of food allergies as a serious public health issue.

Thanks to your commitment and support, FAAN and FAI have made great strides over the years. The merger comes at a crucial time in the national discourse around food allergies, and we look forward to continuing to partner with you as we work to advance research, education and advocacy.

John Lehr, FARE’s chief executive officer, will lead our executive team. John brings more than 20 years of healthcare nonprofit management and fundraising experience to FARE.  He previously served as the president and CEO of CureSearch for Children’s Cancer and vice president of major and planned giving for the Cystic Fibrosis Foundation. The executive leaders of FAAN and FAI, Maria Acebal and Mary Jane Marchisotto, will remain involved in the merged organization. Maria will serve as a senior advisor and spokesperson for FARE. Mary Jane will serve as the senior vice president of research and operations, with a primary focus on growing the organization’s research portfolio.

Through the end of 2012, FAAN and FAI events, public communications and websites will continue with the existing organizations’ names. FARE will debut its new logo and website, which will be located at www.foodallergy.org, in early 2013."

PS: I love the new name...

FAAN Walk For Food Allergy in Westchester NY

“My grandmother started walking five miles a day when she was sixty. She's ninety-seven now, and we don't know where the heck she is.” 
Ellen DeGeneres

Okay that quote has nothing to do with food allergies but I LOVE Ellen DeGeneres' humor (as does my son Eden) and really, if you think about it  - it's not a bad metaphor for a few thoughts on few food allergies:

1. With all the research and treatment in progress, if families and individuals keep bringing their support who knows how far we will all get in terms of making life safe and livable for people with food allergies?

2. It's never too late to start walking so join me in Glen Island Park as my family walks in the FAAN WALK FOR FOOD ALLERGY and I sign copies of my book Feeding Eden: The Trials and Triumphs of a Food Allergy Family (15% proceeds to FAAN of course.)

3. Speaking of humor - as food allergy families wade through the challenges of travel, school safety and holidays  - let's use our sense of humor to get us through it with a smile.

 

 

 

 

 

Words Matter

I get excited about words. And I love it when other people have that "just right" way of saying things. I think kids can learn to love words when parents play around with new or unusual vocabulary. I do that a lot.

I also have a subscription to A.Word.A.Day, described as "a community of more than one million linguaphiles in more than 200 countries." It's a free subscription where you receive a new word every day in an email with its definition, etymology, usage etc. The "words of the week" have a theme, sometimes esoteric but always interesting. 

When I was getting my M.Ed (Masters in Education) "being part of a community of learners" was the buzz for graduate students. As a parent, I welcome community-based sites that offer painless education. And as I've learned since writing Feeding Edenwords can make a difference and make change in our world. Remember parents - all books begin with just one word.

“She Gets It” – A Review of Feeding Eden

When life gets hard I want to be gotten.  I want to be understood and seen with clarity by the people I share my life with. Most of us do. This weekend, in a book review posted by The Food Allergy Mom, this weekend, she paid me a high compliment. She felt that my story, my writing conveyed --

"There were moments where it was if Weissman’s own fears and feelings were so reminiscent of my own, it was as if she had a window into my soul.  She’s walked miles in the shoes of mothers of children with food allergies and asthma everywhere…she gets it."

She also points out that while I do "walk miles" in the shoes of my fellow allergy moms nevertheless  "Weissman actually recognizes that point of view in her book and ultimately encourages moms to do what is best for their personal situation.  I applaud her for not caving to the one-size-fits-all recommendations made in some food allergy literature."

I'm grateful that this mother and reviewer recognized my efforts to model an open and accepting attitude regarding food allergy parenting and lifestyle choice. Being a parent is one of life's most intimate experiences. It is all the more so when dealing with a child with a chronic health condition. I can't assume that my individual wisdom would extend past my own family.

You can read the full review HERE.

Spoonrests For The Soul

Spoonrests. I have several. If you are the parent of food allergic child, you may have already figured this one out: I don't want to rest Eden's cookware near any other utensil that might have an allergen on it. In our situation (multiple anaphylactic food allergies) I don't cook dairy and soy free because I have another child with her own nutritional needs. I do cook nut, peanut, sesame, and salmon free, as it were, but Eden is also allergic to many legumes my daughter likes. So I have four spoon rests and some mismatched dishware so I can mark my children's food while I make it.

My challenges surface when we are invited to be guests at meals. For example, when attending a simple bagel brunch, even when I know that Eden's next meal is safely stashed in my non-contaminated plastic containers and his fork will not touch anything my hands haven't lovingly made, I have found myself fixated on my hostesses one, single, spoonrest, potentially sloshed with creamer, hastily rinsed and now the recpipient of dripping gravy and buttery knives. Like Warhol's Cambell Soup can, that spoon will loom larger than life. I know allergy parents who have nightmares about peanuts and other allergens but I'd love to know how you feel about spoonrests.