UFAN’s Division of Eosinophilic Support (DOES) is proud to be an official National Eosinophil Awareness Week Partner with the American Partnership for Eosinophilic Disorders (APFED).
“APFED is a national organization for those who suffer from eosinophilic disorders,” says Michelle Fogg, President of UFAN. “We’ve used their website and resources personally and professionally for years, so we’re so happy that they want to partner with our organization.”
National Eosinophil Awareness Week runs from May 15-21, 2016. By becoming a partner, UFAN pledges to use this time to educate others about these rare, chronic allergic diseases.
“Not only do my son and daughter suffer from this disease,” says Tammy Zundell, President of UFAN DOES, “but many Utahns are affected by this disease. I’ve been working in support groups even before DOES was created and the need for awareness and support is great. Utah is ahead of many states in the fact that we offer in-person support meetings and educational conferences, as well as online support.”
In order to really capitalize on this special week, UFAN also held an art contest where those who suffer from food allergies, and/or eosinophilic disorders could creatively express what this year’s theme, “React with Respect”, meant to them.
UFAN DOES plans to continue to share information and shed light on this disease throughout the week on their social media channels. Please join us in lending your voice, and sharing your own experiences with this disease. You can follow them, and comment on their multiple channels:
To learn more, or to become involved, please email firstname.lastname@example.org
“We’re grateful for the wonderful awareness and groundwork APFED has laid for our eosinophilic community, and we hope that we can build off of that and continue to grow resources for those in our local area that suffer,” said Zundel.
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:
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.
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!
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.
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).
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.
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.
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!