Raising Awareness of Rare Diseases This Saturday

By Kelley Lindberg

There are plenty of times in life when being rare or unique is good. Having a rare artistic talent, for example, is a blessing. Having a rare skill that is in high demand, such as being able to track down security breaches in high-risk networks, provides lucrative prospects. Having a rare ability to choose winning lottery numbers would be especially nice.

But having a rare disease can be a nightmare.

Neither regular doctors nor specialists recognize your symptoms. Even if they do, there may not be enough medical data to tell them how to treat you. You can waste precious years trying to find out what’s wrong, steadily growing sicker as you try one false lead after another. Drugs and treatments, if they exist, are often astronomically expensive. Because it’s so rare, researchers don’t study it, and pharmaceutical companies don’t want to invest the average $1.5 billion it takes to bring a drug to market when they know only a handful of patients will ever pay for it. You feel like a guinea pig that doctors are just throwing darts at, day in and day out. And in some cases, you feel like you’re perched on the ragged edge of disaster every day.

My sister-in-law, Jennifer, has just such a disease. Hers is called MonoMAC, and doctors only know of 25 other people who’ve ever had this disease. You can read more about her here.

That’s why I’m happy to help spread the word about “Rare Disease Day,” which is the last day of February every year. That’s this Saturday, and the organization called Utah Rare is holding a half-day Rare Disease Day Symposium in Salt Lake City (with a wonderful array of speakers) to help spread awareness among the public as well as among policy makers, public authorities, industry representatives, researchers, and health professionals. The Saturday symposium is being modeled after the popular TED Talks, and it will be live-streamed and recorded.

In addition, Utah Rare will be holding a Rare Disease Day State House Event at the State Capitol Building Rotunda in Salt Lake City this Friday, from 3:00 – 5:00pm to reach legislators, legislative staff, the public, and the media.

Rare Disease Day isn’t just a Utah event—84 countries around the world participated in Rare Disease Day events last year.

Here are the details for the Saturday event:

• Utah Rare Disease Day Symposium
• Saturday, Feb 28, 2015
• 12:00pm – 5:00pm (MST)
• Eccles  Health Services Education Building, 26 S. 2000 E, Salt Lake City, UT 84112
• Tickets: Free! But you need a ticket, so order them online at Utah Rare Disease Day Symposium

Confirmed speakers for the Saturday Symposium include:

• Dr. Dean Li, Associate Vice President for Research and Chief Scientific Officer for University of Utah Health Sciences
• Dr. Ed Clark, Chief Medical Officer of Primary Children’s Hospital and Chair of Pediatrics
• Dr. Kevin Jones, Professor and Author of “What Doctors Cannot Tell You”
• Dr. Gholson Lyon, Cold Spring Harbor Laboratory and Utah Foundation for Biomedical Research
• Dr. Reid Robison, Chief Executive Officer of Tute Genomics
• Dr. Robert Selliah, Chief Executive Officer of American Med Chem
• Dr. Christopher Gibson, Chief Executive Officer of Recursion Pharmaceuticals
• Crystal Shearman, producer of “Undiagnosed: Medical Refugees” film
• Gina Szjanuk, Founder of Rare and Undiagnosed Network
• Season Atwater, Founder of Aware of Angels

Come learn about rare diseases and the impact they can have not just on individuals, but on the community around them, and learn what’s being done to address these heart-breaking issues.

And if you happen to have a rare disease, know that events like this are going on all over the world this Saturday, and we’re all standing beside you.

Student Food Allergy Network

By Kelley Lindberg

I recently learned about the Student Food Allergy Network, an organization started by Nicholas Ditzler to help students—especially college students—learn how to navigate student life with food allergies. I asked Nicholas to tell us about his organization, and I’m so excited to share his story with our food allergy community! Thank you, Nicholas, for helping students be safer at school.

1.              When did you start the Student Food Allergy Network?

Personally, I have food allergies to wheat, dairy, egg, corn, soy, peanut, tree nut, shellfish, melon, and citrus fruits. I am very passionate about allergies and hope to pursue a career in allergy/immunology after undergrad. One of the main goals I had when I started the Student Food Allergy Network was for the student organization to serve as a resource for families who have kids that are at different transition stages in life. Whether they are transitioning from middle school to high school, or high school to college, food allergies can often make this process stressful for both the parents and the child. All our members have been in these families’ shoes and know just how difficult this process can be. By showing parents of kids with food allergies that there are students who have gone away to college and are actively living with and managing their food allergies while still living a normal college life, we hope to relieve some of the anxiety some of these parents face and serve as role models for the kids who have food allergies. The mission of the Student Food Allergy Network is to promote awareness and understanding of food allergies. Guided by this collective goal, and through everyday actions, we hope to inspire SFAN members and members of the community to go beyond the classroom, change the thoughts of others, and become agents of change for the millions affected by food allergies.

2.       How many campuses have a chapter?

The Student Food Allergy Network has its headquarters at the University of Michigan, where it was originally founded. Since our genesis in July 2014, we have opened another chapter of the Student Food Allergy Network at Oregon State University in Corvallis, Oregon, where it is also recognized as an official student organization. We are always looking to continue spreading awareness of food allergies and expanding the Student Food Allergy Network to other high schools and college campuses nationwide.

3.       How does each chapter work? Are there meetings, guest speakers, a Facebook page, etc.?

At both our University of Michigan and Oregon State University locations, we hold bi-weekly meetings. During this time, we do everything from working on projects for organizations such as the Asthma and Allergy Foundation and Anaphylaxis Canada to sharing recipes and alternatives for common allergens, to having guest speakers. One of our past events that was a great success was having the program coordinator of the University of Michigan Food Allergy Center come and advise our members on how to correctly use an epinephrine auto-injector. We also have a Facebook page where we keep everyone posted on what we are currently doing on campus. https://www.facebook.com/studentfoodallergynetwork?ref=bookmarks

4.       How many members do you have so far?

We currently have over 50 members at our University of Michigan and Oregon State locations. We are continuing to expand and reach out to more individuals who want to get involved.

5.       What are the main reasons students join your network? What can you offer these kids and families?

There are many reasons why students join the Student Food Allergy Network.  However, I would say that the single greatest reason is that SFAN provides a support network for those of us with food allergies.  The Student Food Allergy Network is a great way for students to network with other kids on campus who also have food allergies. Many of our members enjoy trading recipes as well as recommending restaurants on campus that are able to accommodate for food allergies. The Student Food Allergy Network also serves as a great resource for students if they have any concerns regarding food allergies on campus. Many of our members know who to contact regarding specific concerns on campus and are able to help out. For families who have kids with food allergies, we also serve as a team of college-aged individuals who have grown up with food allergies and have been able to successfully transition into college life. We encourage families with questions, whether related to children with food allergies in elementary school or transitioning into college, to send us a message and we can give perspective and advice from someone who has walked in their shoes. Organization Email: SFANexecutiveboard2014-15@umich.edu

6.       What are your plans for the network after you graduate?

The Student Food Allergy Network could not have been as successful as it has been in the recent past if it was not for its passionate and dedicated members towards making a difference in the community and spreading awareness of food allergies. Each chapter has a qualified executive board and comprises all grade levels. After graduation, I plan on passing the torch to another passionate member who I’m sure will strive to promote awareness of food allergies.

7.       If someone wants to start a chapter at their own school, what should they do?

If someone wants to start a chapter of the Student Food Allergy Network at their own high school or university, we recommend they contact us either on Facebook or via email. We have all the information needed to start a chapter at their school, and we would greatly enjoy working with new individuals on spreading awareness of food allergies nationwide.

8.       What is the most common advice you give to incoming college freshman and their parents?

One of the common questions we receive from parents of high school seniors and college freshmen is how to find out if the University Dining Services can accommodate for their food allergies. One of the things I noticed when I was transitioning from high school to college was that the University was very accommodating and made sure I was set up with a chef who knew the severity of all my allergies. However, it does take some initiative on your part to make sure the University knows you have food allergies and need special accommodations. It is very important when you arrive on campus to contact dining services and see if they are able to accommodate your needs. I can personally say, after reaching out to dining services they have been very helpful and set me up with chefs who could make my meals properly without any of the foods I am allergic to. There are some students in our organization who did not contact anyone within the university about their food allergies and have had a difficult time making sure their needs are met. So I would recommend letting the University know of your allergies and need for special accommodations. Going through college with food allergies can be stressful, so knowing some hints like this beforehand can make the process proceed smoothly.  Like Chef Martin told me, “If you don’t tell me, I can’t do anything about it. Actively communicating is the only way we can make this work.”  And a piece of advice for parents: teach your child how to cook for themselves at an early age.  This will serve them well as they transition to living on their own.