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New Support Group for FPIES, EoE and EGOD
Families
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Maija Atkinson's mom, Sadie, is FEEDS support group facilitator.
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Do you or someone you know have a child or family member with digestive tract anaphylaxis problems?
Meet and learn from other families whose members have been diagnosed with FPIES, EoE and EGOD diseases at the FEEDS Support Group's first meeting.
FEEDS Support Group
6:30 - 8:30 p.m.
May 3, 2012
@ Caribou Coffee
7101 France Ave. S.
Edina
Meet and greet others, including Dr. Nancy Ott, FEEDS medical advisor.
Questions? Email us ...
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Find us on Facebook! | |
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Lakes Area Support Group Meeting
May 9 - 6:30 PM
Prairie Bay Restaurant
15115 Edgewood Drive Baxter, MN 56425
Guest speaker: AFAA Executive Director, Nona Narvaez |
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Team Locomotives Walked (and donated) Full Steam Ahead to Finish First!
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(Left to Right) Joseph Hanna & his cousin at Awareness Walk
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Joseph Hanna, 3, walked in his first Food Allergy Awareness Walk at Mall of America�.
To support their son, who is severely allergic to peanuts, cashews, eggs and dairy, Megan and John Hanna vowed to match any pledges their son received. Joseph, who likes trains, called his group "Team Locomotives."
That became a winning strategy for the Roseville family, who gathered the largest group of walkers and raised $4,235 during the fourth annual charity event on March 24.
"We wanted people to realize (severe food allergies) are part of our lives," Megan said.
Last summer, Joseph came in contact with cashews and went into anaphylactic shock.
The Hanna's other two children do not have severe food allergies. When Joseph was diagnosed at 4-months-old, his doctor recommended they seek support from the Anaphylaxis and Food Allergy Association (AFAA), the non-profit educational and advocacy association that is sponsoring the Awareness Walk.
Megan has volunteered for the association and has attended the annual AFAA Conference and Expo. She gleaned a wealth of information about severe food allergies and said she appreciates networking with other parents in similar situations.
"It's nice to know when you go to activities that there are other parents to corroborate with; you're not the only one," she said.
Proceeds from the benefit walk will offset costs of ongoing programs and advocacy work by the association.
There is still time to donate. Click HERE through June to contribute!
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AFAA In the News
Wall Street Journal included AFAA's 2002 push for epinephrine in Minnesota ambulances legislation.
Sara Eichens, winner of the 2011 AFAA Education Award.
AFAA's work was also featured in: Northfielder News
Minnetonka Patch
St. Anthony Park Bugle
Fox 9 News
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Thank you to our hardworking volunteers for spreading awareness!
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FDA Food Code
Available in Spanish
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The 2009 FDA Food Code in Spanish can be found HERE.
Once at this page, click on the link to the Spanish version.
PLEASE NOTE: The posting of the 2009 FDA Food Code in Spanish does not include the 2011 Supplement.
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EDUCATION NEWS
Host Family Needed for Exchange Student with
Celiac Disease
Pacific Intercultural Exchange (PIE), a nonprofit agency, is searching for volunteer host families who could accommodate exchange students with food allergies/environmental allergies such as Celiac disease, peanut allergies, and allergies to pets.
Several students, including a young lady from Norway who has Celiac disease, will be arriving in August and stay through June while they attend local public high schools where the host family resides. All students are 15-18 years old, speak English, have medical insurance, and their own spending money. A volunteer host family provides a room (which may be shared), meals, and a caring environment.
PIE is fully accredited by CSIET and abides by US State Department regulations. PIES has local area representatives nearby and provides group orientations and enhancement activities. Volunteer host families are eligible to take a $50/ month charitable tax deduction. Students are placed throughout the US, and local area representatives are available in locations near you. Please contact Mary Armstrong at 952-236-0745 for more information.
Bullies Deliberately Spread Allergen | |
A 7-year-old was bullied at school because of peanut allergy.
Read more ...
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Managing Food Allergies in School
A health care professional will provide ideas for working with your school to put processes in place to keep your child safe.
Free program is 6:30-8 p.m. at CentraCare Health Plaza. Register or call St. Cloud Hospital Women & Children's Center at (320) 229-5139 for more information.
Brookings school district considers ban on peanuts
A South Dakota school district considers whether to be peanut-free. Read more ...
Asthma and Allergy policy in Quebec
New coalition wants a uniform policy for all Quebec schools for managing food allergy and asthma cases. Read more ... |
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MEDICAL LINKS
Gut Bacteria Study
One study suggests that therapeutic
targeting of immune cell responses to resident gut bacteria may be beneficial in treating allergic diseases.
Read more ...
CambridgeUniversity
Receives Research Grant
Part of grant will go to researching a cure for peanut allergies.
Read more ...
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Two-step Test Toward Diagnosis
Researchers have developed a two-step test to diagnose peanut allergies in patients. By isolating a part of the peanut protein that individuals are allergic to, Arah2, researchers can use a blood test to determine peanut allergy. This would reduce cost for families and reduce the number of oral food challenges which could lead to a severe reaction like anaphylaxis.
Read more ...
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NEWS LINKS
Adult Onset Allergies
Food allergies that develop in adulthood can be severe.
Read more ...
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Growing Awareness
Wall Street Journal 'Lunch Break' discusses severe food allergies
Hear more ...
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Advertisement
RESEARCH STUDY FOR ADULTS WITH A PEANUT ALLERGY
Have you been diagnosed with an acute allergy to peanuts? If so,
you may qualify for an allergy research study of an investigational drug at
Clinical Research Institute.
TO QUALIFY:
- Ages 18 - to 50 years old
- Diagnosis of an acute allergy to peanuts
There will be 18 office visits over approximately an 8 month period. Qualified volunteers receive investigational study drug and study-related testing at no cost and compensation up to $1,950.00 for time and travel.
For more information call Clinical Research Institute 612-333-2200 x 5 or visit our website www.CRIminnesota.com.
| Clinical Research Institute
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WORKSHOPS | |
Label-reading Made Easy
Practice reading labels to gain confidence in identifying potential allergens in food products. A health care professional will provide resources to help you understand portion sizes, calories, fiber, fat
carbohydrates, sugar, sodium and protein content.
This free program is 6:30-8 p.m. Aug. 23 at CentraCare Health Plaza. Register or call St. Cloud Hospital Women & Children's Center at (320) 229-5139 for more information.
How to Prevent Bullying
Learn helpful tips from a health care
professional on how children and adults can model compassion, self-control and helpfulness toward othersto proactively prevent food allergy-related bullying in school.
This free program is 6:30-8 p.m. Oct. 11at CentraCare Health Plaza. Register or call St. Cloud Hospital Women & Children's Center at (320) 229-5139 for more information. | |
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MINNESOTA STATE FAIR
Volunteer for the
AFAA Booth
Aug. 23 through Labor Day
More than 17,000 people visit the AFAA Food Allergy booth annually and learn about how food allergies affect them. Activities include a quiz, Mad Science experiments and an "Ask the Doc" segment.
Volunteers receive free fair admission. Online volunteer registration begins in July (shifts go fast)! Individuals, clinics, and groups are encouraged to volunteer. Experienced individuals interested in being Shift Leaders should contact AFAA now.
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Peanut-Free Baseball: MLB Twins and Saint Paul Saints | |
Take Mom to See Mudonna on Mother's Day!
Take the stress out of Mother's Day and tickle mom's funny bone by taking her to see the Saint Paul Saints May 13. The entire stadium will be peanut-free and the bleachers will be power washed before the game.
Saint Paul Saints v. Winnipeg Goldeneyes
Start time: 1:05 p.m.
May 13
Order tickets HERE. Hot dogs and beverages will be available for purchase. Persons with multiple food allergies should inquire about other available foods.
For an extra $5, get a hot dog, soda and Saints Baseball hat!
"We want to give families an opportunity to enjoy a peanut-free game and to be able to sit where ever they want in the stadium," said Chuck Richards, ticket sales director.
Richards conducted a site visit with AFAA co-founder Nona Narvaez to identify the special needs of food allergic fans and to discuss the logistics of preparing for the event.
The game will have the traditional "Saints flavor," including entertaining fans with funny peanut jokes and antics, Richards added.
Twins Seats Went Faster than Liriano's Fastball!
The Minnesota Twins offered 10 games (600 tickets) this season where peanut-allergic fans can view professional baseball from two Target Field balconies located in left field.
Games are sold out, but you can email AFAA to add your name to the waiting list (please include full name, address, email, and phone numbers to be able to reach you quickly):
(Note: there are no refunds/exchanges from the Twins ticket office but you may sell your unused tickets to AFAA families on waiting lists if you cannot use them.)
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AFAA 3rd Annual Summer Camp
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Campers enjoy hiking and other traditional camping activities.
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Where a Kid with Food Allergies is Just a Kid
Registration is nearing for the 3rd annual AFAA Summer Camp, designed specifically for families with food allergies. Volunteer to help plan activities or serve as a camp counselor.
Held at Voyageur Environmental Center June 9-10 in Mound, campers enjoy traditional activities, such as archery, swimming, campfires, flag-raisiing ceremonies, canoe paddling and sing-a-longs. Staff and AFAA medical advisers, are planning a Saturday day-camp and optional overnight camp, managing dozens of allergens for a safe and memorable experience.
Space is limited: registration materials will be sent out through email by May 4th and should be returned as quickly as possible to guarantee a spot at camp. Questions? Contact AFAA. Help send a kid to camp! DONATE to AFAA's needs-based scholarship program.
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Hey Diddle Diddle, Help Solve the Food Riddle
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 Walk Donations Accepted
Through June
It's not too late to support AFAA's Food Allergy Awareness Walk, which included hundreds of walkers March 24 at the Mall of America. Walkers earned pledges and raised proceeds that benefit the association's family-friendly programs and advocacy efforts.
EMAIL your tax deductible donation today!
Interested in getting involved planning next year's Walk? Come to an information party on June 18 at Caribou Coffee Shop 3354 Rice Street, Little Canada, MN 55126 (email AFAA with questions or for more information). Come join the fun!
 | | Food Allergy Awareness walkers earn their pledges. |
 | | Jamie of Team Smile |
 | | Maija Atkinson |
 | | Team GMW (Werhans) of Cloquet |
 | | The Lily Bugs |
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| Banquet Awards Dinner | | Meet Leaders of the Food Allergy Community
Several outstanding individuals who have significantly contributed to the food allergy community were honored Feb. 11 at the annual Banquet Awards Dinner, held at Jimmy's Food and Cocktails in Minnetonka. Award-winning anchor, reporter, writer Dennis Douda of Mayo Clinic emceed the event.
AFAA Awards are given to Minnesotans for extra-ordinary accomplishments in a number of areas, including the category of Saving a Life.
Congratulations to the honorees:
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Encee Dennis Douda and State Rep. Alice Hausman |
Minnesota State Representative Alice Hausman received the 2011 AFAA Award in the category of Policy. In 2002, Hausman spearheaded legislation to get epinephrine into all Minnesota ambulances. At the time a new and much smaller organization, AFAA was up against professional lobbyists that opposed mandating epinephrine in all ambulances. Hausman guided the citizen activists through the governmental process. Without the guidance of Hausman, epinephrine would still be sporadically available. As a testament to her impact, Emergency Medical Technicians have used life-saving epinephrine devices 1,523 times in Minnesota since the legislation passed.
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Encee Dennis Douda and Sarah Eischens |
Sarah Eischens, health coordinator for the Waconia school district, received the 2011 AFAA Award in the category of Education. As this past year's student fatalities in Illinois and Virginia demonstrate, managing food allergies in a school setting is vital. In September 2008, the Waconia School Board implemented a policy to manage life threatening allergies. Eischens became responsible for implementing the board's policy. Since that time, Eischens has worked very hard to put together comprehensive procedures to help protect students with life-threatening food allergies. Under her direction, the school district sends out an informational packet, forms, and information to each family with a student with an identified life-threatening food allergy. She works with each family individually to come up with an Allergy Management plan to meet the needs of each student. She has also helped other school districts put together similar procedures.
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(Left to Right) Emcee Dennis Douda, Diana Adamson, Anne McLellon, Keith Henslin |
Diana Adamson, Keith Henslin and Anne McLellon received the 2011 AFAA Award in the category of Exceptional Volunteerism. The AFAA Food Allergy Summer Camp is the first and only one of its kind in the United States for children and families with food allergies. AFAA works with the camp staff at Voyageur Environmental Center, a facility of the Boys and Girls Club of the Twin Cities. The camp - intentionally small - served 15 children and 7 adult campers, and managed 20 different food allergens. It could not have been possible without the commitment and involvement of Keith Henslin and Diana Adamson of the Voyageur Environmental Center. Anne McLellon served as Camp Director in 2011, thoroughly analyzing risk factors and putting in place policies and practices to ensure the safety of the campers and to fulfill the educational and recreational needs of the campers of all ages.
Andrew Gray, Katherine Kmit and Katie Miller are the 2011are the recipients of the AFAA Award in the category of Saving a Life.
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(Left to Right) Emcee Dennis Douda, Katie Miller, Andrew Gray and Katherine Kmit |
On the eve of the July 4th holiday weekend, AFAA received an alarming phone call from an emergency room physician at Children's Hospital. There was a 5-year-old boy who was dependent upon amino acid elemental formula in the emergency room and the child's parents did not have access to specialized formula. Amino acid formula cannot be purchased from a grocer. It is considered medical food and for this child it was his only source of food. AFAA made three calls - one to Kathryn Kmit of the Minnesota Council of Health Plans; one to Katie Miller of Nutricia North America; and one to Andrew Gray of Abbott Nutrition, the latter two being representatives of elemental formula companies.
AFAA passed basic information to Kmit, who began to unlock the puzzle of why the family did not have access to the formula. Reached by cell phone during the holiday weekend, Kmit immediately responded and devoted hours to resolving the dilemma.
Meanwhile, the family left the hospital to go home. Andrew Gray and Katie Miller, each from amicable but competing companies, sprang into action. Gray tracked down allergists' clinics that had samples of Elecare - the product name for the formula his company produces. Gray found clinics which had samples and were still open. He obtained and delivered formula to the child's allergist and AFAA's offices. Unfortunately the family did not have transportation to pick up the formula. Miller, of Nutricia North America (the makers of Neocate and Splash), drove to the family's home to deliver the life-saving formula in person.
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| Minnesota Teen Enters Food Allergy Clinical Trial | |
Max Narvaez, son of AFAA Executive Director Nona Narvaez, spent a week in New York City embarking on a 6-9 month food allergy clinical trial.
Max, who is 13, is allergic to milk, egg, some treenuts, beef, pork, and avoids fish and shellfish. He has had anaphylaxis to milk, egg, and possibly treenuts (the trigger for a reaction last year was never determined). His parents discussed the opportunity of entering the trial, which is being conducted in Chicago, New York City, and in Little Rock, and decided that the New York City location was best since his mom was planning to attend FAI meetings there (see article in this issue) and they had friends to house them. Max was eager, but reluctant to miss school.
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Max Narvaez relaxing at New York City's Mt. Sinai Hospital, where he began a food allergy clinical trial.
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The initial week consisted of 3 days of appointments at Mt. Sinai School of Medicine in Manhattan, where Dr. Xiu-Min Li directs the FDA Phase 2 studies. The first day was a full check-up and intake screening, and allergen skin testing; the second day included two food challenges in the hospital to determine what level of the allergen would trigger a reaction. Prior to the challenge, an I.V. catheter was inserted into his arm. During the food challenge, the nurse was posted at his door the entire time, exclusively focused on him, regularly checking his oxygen levels, skin, etc.
Max ate small, but ever-increasing, increments of (soy-based) chocolate pudding over the course of hours. Max nor the nurse giving him the pudding knew whether it contained the treenut protein or not. When he did begin to react, nurses were instantly ready to assist him with medications (diphenhydramine and epinephrine), monitoring him constantly and stopping the reaction quickly.
"This means I can be in the trial!" Max exclaimed (happily!) after he had the reaction. Although he was tired, he was excited because he really wanted to participate in the trial.
The third day was a shorter appointment where he again was checked over and then given the first dose of pills. The pills, about the size of Skittles or M&Ms, are given 3 times a day - eventually for a total of 30 pills a day (to be taken with meals or snacks). Max nor his parents or his nurses know whether he is taking the actual FAHF-2 (Food Allergy Herbal Formula 2) or a placebo. But Max says that even if he is being given the placebo and shows no improvement with his food allergies, "I am helping to find the cure to food allergies."
Click here for more information about entering the clinical trial, open to those aged 12-45.
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| Movers and Shakers Meet in the Big Apple | |
This last week the movers and shakers - accomplished food allergy advocates serving on the Food Allergy Initiative's Advocacy Steering Committee - gathered in New York City for meetings and to attend FAI's annual spring luncheon fundraiser. Advocates came from Illinois, Massachusetts, Minnesota, New Jersey, New York, Wisconsin, etc. and others were conferenced in by phone. Discussion included a range of topics, including food allergy research sites funded by FAI, and work of the six subcommittees (Airlines; Colleges; Epinephrine Access; "May Contain" Labeling; Restaurants; Schools).
The luncheon featured an award-winning news anchor, who herself suffered a severe food allergic reaction just days before the event; Dr. Hugh Sampson, who spoke about oral desensitization food allergy research; a short Teen Talk video of food allergic teens; and exhibitors from food allergy friendly companies in the New York City area and nationally, such as Divvies and Peanut Free Planet. The event, held in the glamorous Cipriani's on 42nd Street in Manhattan, was attended by 600 and raised $758,000 towards food allergy research.
Click here to see the FAI Teen Talk video. |
| From Farm to Fork: Every bite you take is affected... | |
Every bite you eat is affected by the U.S. Food and Drug Administration (FDA) Food Code, and AFAA recently had significant influence on changes submitted to the FDA Food Code.
AFAA Executive Director, Nona Narvaez, flew to Indianapolis for 4 intense days at the biennial Conference for Food Protection (CFP), where she presented an issue proposal submitted by AFAA to the CFP's Council III. The issue proposal was to get FDA to release restaurant guidelines that were composed in 2007. The guidelines were written as a result of the 2004 Food Allergen Labeling and Consumer Protection Act, or FALCPA, which was implemented in 2006. Food allergy advocates have been trying to get the guidelines released, but they have been stalled at FDA headquarters. Both advocates and the food service industry eagerly await them.
Not only did the proposal pass unanimously, but the FDA representative to Council III publicly apologized to the Council and to the entire ballroom audience for the delay in the guideline's release. The CFP will now submit this proposal - and others relating to food safety - to the FDA for responses and action.
In addition to advocating for restaurant guidelines, other issues had input from Ms. Narvaez at the Conference: for instance, a proposal to wash cutting boards between raw animal foods (i.e. fish, shellfish, beef, poultry, lamb, etc.) was proposed but tabled because industry thought it would be onerous to implement. By caucusing with proponents, the submitter, opponents, Council III members, and CFP delegates, a compromise was reached to salvage the proposal: the result is that CFP recommends that cutting boards must be washed between common raw animal allergens (fish, shellfish).
Ms. Narvaez not only had influence on the 2 allergy provisions, but also another relating to increased CFP participation by consumer groups. The CFP Council members and delegates were extremely pleased to have an AFAA participant: they even recruited Ms. Narvaez to serve on a committee for inspection reports - thus AFAA's policy work on influencing FDA will continue until the next conference, in 2014. In addition to formal issues, she was able to dialogue with USDA representatives about labeling and facility oversight; and to various state and local regulatory representatives and National Restaurant Association and other industry representatives about food allergen issues.
Travel expenses for Ms. Narvaez, who works full-time pro bono for AFAA, were paid by two national food allergy non-profit organizations with which AFAA works closely: the Food Allergy Initiative (FAI) and the Food Allergy & Anaphylaxis Network (FAAN). During the conference she emailed and texted the developments as they happened to the FAI Advocacy Steering Committee's Restaurant Subcommittee and to FAI and FAAN CEOs. Last week she presented the results of the work at CFP when the full committee met in New York City (see accompanying article in this issue).
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FOOD ALLERGY AWARENESS WEEK
May 13-19
13 - St. Paul Saints Peanut-free Baseball Game! Food Allergy Proclamation from Minnesota Governor Mark Dayton.
14 - Thank teachers, restaurant servers, babysitters, and friends for their food allergy supportive efforts.
16 - Write your legislators or school board or Members of Congress to share your stories (copy AFAA on the letters/emails for future advocacy efforts).
19 - Host a garage sale & donate proceeds to AFAA. Share food allergy literature at the sale!
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CONTACT INFORMATION
Anaphylaxis and Food Allergy Association of Minnesota (AFAA)
Editor: Sue Hegarty, Pencil Thin Communications, Inc.
Email: info@minnesotafoodallergy.org
Website: www.minnesotafoodallergy.org
E-Magazine: (612) 272-1000
AFAA Office: (651) 644-5937
To Subscribe: CLICK HERE
Food Allergy E-Magazine is published quarterly by the Anaphylaxis and Food Allergy Association of Minnesota (AFAA)
There is no charge to subscribe but donations are gratefully accepted. Simply donate online or send your donation to the address below.
No part of this publication may be used without the written consent of the publisher. Every effort is made to avoid errors, misspellings and omissions. We reserve the right to edit or reject submissions at our discretion, without notice.
2200 Hendon Avenue; St. Paul, MN 55108
(651) 644-5937
info@minnesotafoodallergy.org
www.minnesotafoodallergy.org
The Anaphylaxis and Food Allergy Association of Minnesota (AFAA) is a 501(c)3 Minnesota Non-profit whose mission is to educate, advocate, and support those with life-threatening food allergies. We operate through the generosity of volunteers & donations. Please support our work.
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