Utah Food Allergy Network (UFAN)

Primary Children’s Hospital Opens FED Clinic for Food Allergies & Eosinophilic GI Disoders

Primary Children’s Hospital Opens FED Clinic

We couldn’t be more thrilled to announce that the joint Allergy-GI-Nutrition clinic at PCH opens today, May 17th, 2016! It is called the FED Clinic (Food Allergies & Eosinophilic GI Disorders Clinic), though people will often refer to it as the EoE or EGID clinic. The FED Clinic will operate every Tuesday afternoon at Primary Children’s Hospital Eccles Outpatient Center. The core staff will be Dr. Jake Robson and Dr. Molly O’Gorman (GI), Dr. Rafael Firszt (Allergy), Tina McGrew (Nutrition, Allergy Focus), and Dr. Laura Bennett Murphy (Psychology).

The main goal of the FED Clinic is to provide longitudinal care for children in the Intermountain Region with eosinophilic GI disorders. A secondary goal of this clinic is to enter patients into a longitudinal database, to track symptoms, markers of disease activity, endoscopic findings, and response to treatment.

The FED Clinic can be reached at 801-213-3599 and is open to referral of patients, including:

  1. those with high concern for EGID without a formal diagnosis,
  2. those with an EGID diagnosis with complex/refractory disease,
  3. those with an EGID diagnosis in need of coordination of care to present a unified front to patient/family in a single visit

UFAN applauds the many physicians, patients, families, and advocates who have been asking for and making this wish a reality for over three years! Thank you to Primary Children’s Hospital and University of Utah Health Care for responding to the voice and needs of the community. We look forward to championing the new FED Clinic and supporting the efforts of excellent coordinated care and novel research initiatives.

Advertisements

Winners Announced in UFAN Art Contest!

We were thrilled to receive your wonderful art contest entries! Thank you to everyone that entered our awareness week art contest themed “React with Respect”. You are so talented and really helped to raise food allergy and eosinophilic disease awareness. Here are our featured winners who each win a $25 gift card!

2016 Art Contest: Food Allergy and Eosinophilic Awareness Weeks

UFAN is excited to announce our Art Contest for Food Allergy and Eosinophilic Awareness Weeks! Get your creative juices flowing with this year’s theme, React with Respect.

We encourage submissions about how you or others React with Respect in regards to bullying, reactions, epinephrine, the seriousness of food allergies, dealing with differences, feeding tubes, etc. Submissions can be a poem, essay, fictional story, painting, drawing or any other creative work of your choice.

Please find the official rules and entry form below and we are excited to see your amazing talents!

For more ideas on how you can get involved during the awareness weeks, visit Food Allergy Research and Education, American Partnership for Eosinophilic Disorders, and Campaign Urging Research for Eosinophilic Disorders.

UFAN 2016 Art Contest: ENTRY FORM & RULES

UFAN Awareness Week Art Contest 2016-page-001

Get your Easter Baskets Ready!

Help us celebrate our 6th annual Food-Free Easter Egg Hunt on Saturday, March 26th!

Thousands of eggs are being filled with toys for your child’s Easter basket! Come and enjoy a craft and a photo with the Easter Bunny, all in a sugar-free and allergy-friendly environment. Ages 0-12 welcome. 10 eggs guaranteed for each child.

PRE-REGISTRATION IS REQUIRED and ends March 12th–there will be NO on-site registration accepted.

Thank you! This project was made possible through a community grant from Food Allergy Research & Education (FARE).  Print

 

UFAN 2016 egg hunt v2 0216

NEXT STEPS after Sanofi recalls ALL Auvi-Q epinephrine auto-injectors!

1 – Visit the Auvi-Q web page to get the most current updates on the recall. Sanofi has been responding to all relevant questions, concerns, and providing direction as they increase bandwidth in responding to consumer concerns there.

Sanofi has added an additional phone number for consumers to call to get directions for returning your device and reimbursement information. Please call EITHER 1-877-319-8963 OR 1-866-726-6340. They had previously noted that, due to the high volume of calls being received, callers may have received a message that the line is down, and are asking to please call back if this happens.

2 – Sanofi also recommends consumers contact their healthcare providers to obtain a new prescription for an alternate epinephrine auto-injector. They have noted that in the event of a life-threatening allergic reaction (anaphylaxis), patients should only use their Auvi-Q device if another epinephrine auto-injector is not available, and then call 911 or local medical emergency services.

3 – Finally, Mylan has issued a press release confirming the availability of EpiPen Auto-Injector for U.S. patients affected by Sanofi’s Auvi-Q® recall. Additionally, Mylan offers several patient programs and resources including the “$0 Co-Pay Offer” for eligible patients* and a patient assistance program for qualified individuals. Patients can download the co-pay card at epipen.com.

One of the top questions being asked is, “Will I have to pay for a replacement device?” From the Sanofi website FAQ, “Initially, patients will need to pay for their replacement device. Sanofi US will reimburse patients for the full out‑of‑pocket cost when they receive a new epinephrine auto‑injector.” So be sure to keep your receipts! Also, consider calling around to different pharmacies if you are having a hard time locating replacement devices.

Teal Pumpkins + Star Wars = UFAN Trunk-or-Treat Tomorrow!!!

You don’t want to miss dozens of families painting pumpkins teal for food allergy awareness and a Star Wars themed vehicle complete with star troopers and the bad guy himself while little ninjas and fairies prance around collecting safe non-food treats from spectacularly decorated trunks!!! It’s going to be SPOOKTACULAR!

A special THANK YOU to Food Allergy Research & Education (FARE), Urban Farm & Feed, and the 501st Legion for helping us make this the biggest and best event of the year benefiting kids with severe food allergies, eosinophilic gastrointestinal disorders, and PKU disorders.

UFAN-halloween-8x10-v2-0915 (1)

Map

UTAH: Kids & Families Need Your Help! Ask Senator Hatch to Lead the Formation of a Rare Disease Caucus

Kids and families need your help! 1 in 10 Americans suffer from a Rare Disease…this includes Eosinophilic Disorders! Please sign this letter asking Utah Senator Orrin Hatch to lead the Senate Rare Disease Caucus via the link below. A few seconds of your time = Utah leading the nation on saving lives. THANK YOU!

http://goo.gl/forms/AgIbzx1Imh